Wondering what to make of life before the Necessary End

I more or less invited myself to Christmas Day lunch at the home of rels of friends of mine.

The day mixed two generations: a brood of 7 cousins and their assorted parents/aunts/uncles. These young people impress me. Some are still at school, some at university, some a year or two out of Uni. They are doing interesting things. They travel. They have opinions. They are interesting to talk to. Some have turned from being 8 year old brats into quite nice people. Some who were once so quiet they wouldn’t utter a word are now overflowing with ideas. I wonder what the future will hold for them.

I had a good time. But I also had a funny feeling that I was wearing a big sticker on my forehead that said “Cancer Victim” or some such. The adults–possibly also the kids–had all learned about It, where “It” represents an aggregate of some combination of “she’s got cancer”, “she’s been in hospital”, “she’s about to do chemo” and “she’s going to die sooner rather than later”.

I suspect that people, understandably, find it hard to reconcile what they see with what they know. I probably look better than when they last saw me: I’ve lost weight, even slept quite well the last night or two. So what they see is someone with a glass of wine in her hand, telling funny stories, looking like any other partygoer. But what they know is that this same person is actually seriously ill, and probably won’t be around for too many more Christmas lunches.

Heck, it’s hard for me to reconcile feeling well with knowing that, inside me, really nasty things are happening.

So people end up talking in euphemisms and try to say things that are brief, genuinely caring, but not too detailed.

The euphemism prize goes to the person who said “I understand you’ve been having some issues lately”. Issues? Yeah, issues.

Pianist David J. Hahn had (yes, had, past tense) Hodgkins Lymphoma and kept up a blog about it: Chronicles of a Cancer Patient.

He has written about What not to say to a cancer patient. Best quote:

Don’t talk about how you once got diagnosed with pneumonia, so you can understand what it’s like. No you can’t. Don’t try. Tell them you can’t even imagine what it’s like to go through something like this.

Nine times out of 10, in ordinary conversation, ‘How are you?’ doesn’t mean anything. We don’t really care how the other person is. No-one takes much notice of the response. It’s just social lubrication.

But not when you’re sick.

People now say ‘How are you?’ with a tone I’ve come to dread. The voice is lowered, quiet, un-animated. It’s almost the voice you’d use in a church or maybe a court. It comes over-loaded with overtones, as if there’s this huge preface of ‘I know you’re not well, you’ve been sick, you’ve been in hospital, you’ve got The Big C‘.

I don’t know what people either want, or expect, to hear. Do you want a litany of woes? Or is it all just so much easier if I say I’m fine? Would a response of ‘I feel absolutely terrible’ constite good news or bad news?

Just so we’re clear here: I’m not going to “pass”, on, over, away or anywhere else. I’m going to die.

We all clear about that?

I’ve decided that chemotherapy is not just cytotoxic (it kills cells). It is also psycho-toxic (it destroys your soul).

The phone rings. “Hi, this is X. How are you?”

What do I say? “Fine.” I’m actually really really sick. I have cancers that will kill me. I hurt all over. The chemo—I’m now into my second cycle—has made me so impossibly tired it’s hard to imagine.

I’m not fine! But I tell people I am. 8 reasons I tell people I’m fine when I’m not:

1. I’m tired of hearing myself talk about myself. As AG, a friend, said recently: “that’s new”.
2. If I feel really bad, I don’t answer the phone. If I’m capable of answering the phone, then I am, by comparison, “fine”.
3. I work for myself. If I’m not well, I can’t work. I want clients to think I’m reliable. So for years I have trained myself never, ever to mention to a client that I have so much as a pimple or a cold. Furthermore, if I’m a client, I’d rather deal with a happy, positive person. So, in the normal (ie pre-cancer) course of events, I always answered “How are you?” with an energetic and positive “Very well!”. It was just good business practice. It’s hard to break the habit.
4. I’ve very largely recovered from the surgery. My whole abdomen still hurts to touch, but I don’t think it’s an after-effect of the surgery; I think it’s a side-effect of the chemo, which, I assume, will go away eventually.
5. All my current woes are just side effects; I have (so far as I can see) no current cancer symptoms. Somehow it seems churlish to complain about side-effects when fleets of medicos are involved in prescribing, organizing and delivering treatment—even if that treatment is just palliative. I decided to do chemo; it seems wrong to whinge about the effects.
6. No matter how bad I feel today, I’m likely to get worse, for two reasons. First, the side effects of chemotherapy are cumulative. That is, I can expect to feel worse after each cycle than I do now. Second, sooner or later, all this cancer will kill me. I suspect that I won’t feel “fine” then. So there’s no use banging on about how bad I feel today, when I’d just have to find more superlatives tomorrow.
7. The most important reason to tell people you’re fine when you’re not:
   The person on the other end of the phone can do absolutely nothing to fix the problems.
8. And the other most important reason to tell people you’re fine when you’re not:
   I need to save up your support and help and kindness and sympathy for when I really need it.

Google tells me there are 2.5 million—yes, million—web sites displaying the words “cancer” and “journey”.

Cancer is not a journey!

Must etymology and sheer common sense go out the window with cancer? A jour-ney, by construction of the word, lasts one day. Cancer does not.

A journey, by definition, involves travelling from one place to another. With cancer, you’re travelling nowhere. You feel rotten most of the time, so you don’t want to travel, and you can’t get travel insurance anyway.

I suspect that the anti-nausea drugs will stop working if I read one more line of breathless purple prose extolling the virtues of living through your cancer journey. Save me!

While I was railing over the idea that Cancer isn’t a bloody journey I came across a website named http://www.thecancerjourney.org/. It’s allegedly a site for oncology nurses. Its animated and Flash moving images are so distracting that it’s hard to read the text.

I was particularly disappointed to see, on its front page:

Symptoms are the same as side effects

It seems to me that it is really important to distinguish between symptoms of the underlying disease and side-effects (often, but not always unwanted effects) of the treatment for that underlying disease.

Today I observed to a friend that my chemotherapy is palliative. Before this cancer rollercoaster, I thought palliative care meant end-of-life care: pain relief, food and drink, someone to hold your hand, because you’re going to die soon.

And that’s roughly what palliative care seems to have meant in a Four Corners episode this week. (It was a good program, and worth watching, though it’s frightening to see how rapidly some of the patients declined through the course of the report. The long and thoughtful interview with Richard Chye (most of which was not included in the program as broadcast) is particularly worth looking at.)

Elsewhere, ‘palliative care’ means ‘care not intended to cure you’. (Aside: what is the proper object of the verb ‘cure’: does one cure the person or the disease? Not sure.) There’s a non-zero possibility of my chemo leading to a cure (meaning I die of something else). The aim—at least the hope—of chemo is that it is likely to give me an extra year or two compared with no chemo.

I’m not sure whether ‘palliative’ strictly means:

• ‘care offered only to relieve suffering and with no aim at all with regards to treatment’ (so, at an extreme, I suppose that asprin when you have a broken leg would be palliative care)
• or
• ‘care that has a low chance of curing you, but may offer either extended life or lessened suffering’ (and if this is the proper definition, then my months of chemo is palliative, not because I’m in a hospice about to die, but because it aims to extend my life, but isn’t likely to cure me/it).

In the last 6 months, I’ve probably said the word “breast” more times than I’ve said it in the preceding 52 years.

I’ve realized that “breast” doesn’t mean “boob”.

Breasts are female; boobs are feminine. Breasts are medical; boobs are sexual. Breasts are public; boobs are personal. People see breasts daily: they give shape to jumpers and shirts. Torturers deal with breasts. Boobs are private.

I now talk on the phone with friends about breasts in almost the same way I’d talk about big toes. I have cancer in my breasts. No-one has cancer in their boobs.

It’s great pity that we don’t have a word better than “boobs”.

For many years I have puzzled over funeral announcements that include lines like “We miss you Fred”, or “You’ll never be forgotten”. Dead people, it seems to me, don’t read newspapers.

Dead people don’t read websites, either. Nor do people get to read the little booklets produced for their funeral. And they certainly don’t read the cards attached to bunches of flowers.

So please, no written messages to the dead. Address messages to the living!

PS If I’m wrong about all this, if there is a heaven, if I end up in heaven, if I’m living near a heavenly newsagent that makes every earthly newspaper and news magazine available for free, believe me, I would not be reading the dreary classifieds in The Age!

I recently said, to someone who knows I’m sick, that it is sometimes so good to talk to someone who knows I’m sick. And, it’s sometimes so good to talk to someone who doesn’t know I’m sick.

I have a bunch of IT-ish friends, one of whom is a fabulous cook and a generous host, and he invites me round for dinner frequently. I love spending time with them because they don’t know. So I can talk to them knowing that they’re not thinking “She’s got this big, dark problem”.

On the other hand, I have a different bunch of friends who do know. I can talk to them without thinking “I’ve got this big, dark problem—and I haven’t told you about it.”

On Friday I had lunch with a former colleague. I hadn’t seen him for nearly 10 years. Even as I walked into the restaurant I wasn’t sure if I’d tell. I didn’t. Tonight I have dinner with a different old friend. I haven’t seen her for, oh, maybe 4 or 5 years. Will I tell? I’m not sure.

I don’t even know what the criteria are for telling.

But I do have a very clear list in my head of who knows what.

I think my fundamental fear in telling people is that they will no longer treat me seriously. There might never be the same belief that I can think as well now as I could before. That applies less to close friends than, say, clients. So I’ve told only 2 people related to work—and they have both (and I really owe them both for this) kept stumm.

And if you think I’m the only one thinking about who, and what, to tell, think again!

Useful site: CancerAndCareers.org.

I know people who will happily say “fuck” in my presence, but they can’t bring themselves to say “death”. Or “dying”.

You are facing years of work/children/family/house/travel/retirement/whatever. And you often want to talk about those things.

I am reducing the amount of work I’m doing, don’t have children, have reduced travel plans (cancer = no insurance = a bit tricky), and am never likely to retire. Death is a big part of my medium-term future. So it’s one of the many things that I sometimes want to talk about.

For crying out loud! Death is not a four letter word. It’s OK to say the “d” word.

Try it now: “Death”. See? Not so hard!

I don’t want to talk about death all the time. Since most of us know stuff all about it, it would be pointless. But if I say “this cancer is going to kill me”, please don’t respond with fatuous “Oh, no it won’t! You’ll live till you’re 95!”.

Here are some sensible ideas on how to deal with a friend who has cancer.

I came across a web page identifying the Top 9 Gifts for People With Cancer.

Then I discovered there are lots of such pages!

And most of them have it wrong. Wrong. WRONG!

If you have a life-limiting illness then you’re thinking of how to get rid of stuff. Who would appreciate the martini glasses? To whom should I leave my favourite earrings? The vacuum cleaner? 16 pairs of almost identical size 7 1/2 black stilettos, 12 pairs of which (at the time of writing) are unworn?¹

So if I can’t eat it, drink it, read it or (for DVDs) watch it, then it’s just one more damned thing to think about, worry about, store, dust and add to the list of things to sort out. And it’s just one more thing that my friends will have to clean out after the necessary end.

So, no things, please!

There is maybe one exception. If illness has changed someone’s size and shape such that clothes no longer fit (eg, since this time last year I’ve been up two sizes and then down 4!), then ordinary clothes in the new size might be good. Just T-shirts and stuff. Nothing fancy.

Gifts especially for cancer patients

The worst collection of ideas I’ve seen came from CancerGifts.com. They say:

All our gift baskets offer hope, encouragement and comfort, as well as inspire healing and recovery for people going through the turmoil of cancer. These gift baskets are a great way to touch someone fighting an immense battle, and to quietly show them your love and support.

Let’s just pull that apart:

1. “our gift baskets offer hope…”. Huh? How does a basket offer hope? Hope, it seems to me, can only be generated from within. Not from wicker.
2. “…encouragement…”. Encouragement? To do what? Jump off a cliff?
3. “…comfort…”. Can you actually think of anything less comfortable than a basket? A porcupine, perhaps?
4. “inspire healing”. This is good! How can healing be “inspired”? I routinely grate some of my fingers into the parmesan. And in a day or so it heals. Healing, surely by definition, is something the body does to itself. It’s not “inspired”!
5. “fighting an immense battle”. I can’t begin to tell you how much I loathe the idea that cancer is something to be battled. Cancer comes from within you. It’s your own cells run amok. You can’t “battle” it, as you might even be said to battle an infection. And the battle isn’t immense. It’s tiny, cellular, molecular. “[I]mmense battle”, indeed. Save me!
6. “quietly show…” Enough! Stop! No more! Send chocolate.

¹ No, my name is not Imelda.

Let’s suppose the following:

A little scenario

Someone gives you one of those lottery scratchie things as a small gift. The possible prize is $25,000 (in real life those scratchie things have lots of small prizes, so as to lure you into the idea that they’re a good idea; but I digress: for this purpose, let’s assume you win $25K or you win nothing).

There’s a 10% chance of winning. And, therefore, a 90% chance of not winning. That is, winning is unlikely. Not winning is very likely.

For some reason or another, you wait a little before scratching and revealing what, if any, prize you’ve won.

While waiting, do you:

1. Assume you will win the $25,000 and, say, book a holiday to somewhere glam?
2. Assume you won’t win anything?

I suspect most people would think that option 1 was barmy—unless you have a spare $25K sitting around and nothing to do with it.

But let’s assume that you did choose option 1. It’s a 1-in-10 chance to win, but you spent the loot before you knew whether you’d won it or not anyway.

Now, you scratch.

You didn’t win.

How do you feel?

What if you’d chosen Option 2, that is, you assumed the very likely outcome (ie you would not win) and you did nothing out of the ordinary. And (not surprisingly) you did not win. How do you feel?

It seems to me that, from this ordinary story of life, we can discern a sensible rule:

Assume—that is, act on—what is likely to happen, not that which is unlikely.

If you assume that which is unlikely (eg you act as if you’ll win the $25K), you will (a) do something dumb (like spend the money) and (b) feel very very bad about things when you discover that the unlikely event didn’t happen.

If you assume that which is likely (ie, act as if you won’t win), you’ll be fine. Dull, even bored, perhaps. No mad highs of booking the trip; no mad lows of discovering you didn’t win. But fine.

A slightly different scenario

Scratchie, as before.

You meet up with a friend.

And what’s this got to do with cancer?

Re-read both scenarios. Replace “scratchie” with “diagnosis”. Replace “$25K” with “living long enough to have a 60th birthday party”.

From Day 1, the idea that cancer is something to be “fought” has annoyed me.

Cancer is part of me; a tumour is my own cells, gone bezerk.

This isn’t an infection by a bacteria or virus, alien to the body, that must be fought and killed. “Fighting” a cancer would be a civil war against oneself.

So why is there so much talk about “fighting” cancer?

Two hypotheses:

1. “Fighting” means doing everything you can to prolong your life, in spite of the difficulties of the tests and treatment. Have every test and scan suggested. Take every drug on offer. Chop out every bit of you except your brain and heart. Do it all.

   In this hypothesis, “fighting” is what the the medical industry wants patients to do. Other industries would call it “marketing”.

2. “Fighting” is a mind-over-matter idea promulgated by your friends and family. There is some implication here that “being positive” (whatever the hell that’s supposed to mean!) will make you better. It’s an idea that cells in your abdomen will stop dividing in their bezerk way and quietly go to sleep if only the patient could think the right thoughts.

   Witchcraft, in other words. Some may call it religion. Others would call it bullshit.

Please, please, PLEASE, can we stop talking about ‘fighting’ cancer.

And please, never use the phrase ‘he lost his fight against cancer’. It’s insulting to the person who died and demoralizing to the rest of us.

From the report of a CT scan:

The patient appears to have undergone a hysterectomy in the interval since the previous study.

Appears to?!

If there are bits missing, how else does the radiologist think I might have lost them?

This time last year, post-surgery but pre-chemo, I had lunch with an old colleague.

I hadn’t seen him for perhaps 6 months. And that 6 months had involved getting sick, having surgery and so on. He didn’t know I’d been sick.

At the time of that lunch, I felt quite good.

In recent months, almost everyone I see says, “You’re looking good!”. To which I reply, “Yes, everyone tells me that. I wonder what I looked like before!”.

In retrospect, I wish people had told me I looked bad.

It’s not like saying “Gee, you’re not looking well” would have imparted some bad news. I knew I was sick!

But if I’d known I looked so bad, I could have said to that friend over lunch “Hi. I know I look crook. But I’m feeling fine.”

So, please, tell me what I look like. Have I gained weight or lost weight? Do I look sick or well? Tell me! Not because it will affect me—nothing you can say can have any greater impact than knowing my days are numbered. Tell me so that I can say to others “Yes, I know I’m looking well, but I also know that inside, I’m not.” Or “I know I look really bad, but I’m feeling fine today.”

Seen on a t-shirt in the waiting room outside the chemo ward:

“Hair today, gone tomorrow”

The wearer was a smart-looking woman in her mid-30s, apparently with her own hair, neatly cut.

Was she:

• sporting some kind of in-house hairdressers’ joke?
• about to start chemotherapy that would lead to alopecia, and psyching herself up and/or letting everyone know?
• incredibly insensitive?

What, I wondered, did the woman on the other side of the waiting room think, as she sat there with her colourful chemo-scarf and no eyelashes?

Actually, I don’t have a headache.

I just wanted to point out what a ridiculous idiom this is.

• “I have a book.” Good for you.
• “I have two books.” Nice.
• “I have a headache.” Commiserations.
• “I have two headaches.” Huh?

Why do we say “I have a headache”?