Wondering what to make of life before the Necessary End

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).

Great news! The ABC reports that red wine and chocolate “are cancer killers”. Thank the heavenly being of your choice that they didn’t discover that brussels sprouts and cabbage are cancer killers!

I’ll go looking for a report of the original research later and find out just how legit this is. Maybe one researcher drowned some cancer cells in half a bottle of bad pinot in a test tube. Or maybe they’re reporting on a full Stage III double-blind randomized trial. But who cares? I shall take its implied advice immediately!

I’m off to get a drink….

Related post: Chocolate, red wine, research and cancer.

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.

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!

I don’t want to lose references to treating recurrent ovarian cancer. “Recurrent” cancer is cancer that went away after treatment, or at least you hoped it had gone away, but has now come back. I’m not at that stage yet, but I’m likely to be one day. So I’m collecting information for then. Here’s another one:

Catherine Doyle et al, ‘Does Palliative Chemotherapy Palliate? Evaluation of Expectations, Outcomes, and Costs in Women Receiving Chemotherapy for Advanced Ovarian Cancer’, Journal of Clinical Oncology, Vol 19, Issue 5 (March), 2001: 1266-1274. Abstract. HTML full text. PDF full text.

Perhaps the most startling finding of that paper is that 42% of patients with recurrent ovarian cancer, about to receive second- or third-line chemotherapy, believed that the chemo would give them a moderately high or high likelihood of curing their disease, even though:

In this study, the physicians had met the patients and explained the goals of palliative treatment, emphasizing that this would not be curative, and also presented patients with a written consent and information sheet that stressed the palliative nature of this study.

Yet nearly half of these patients thought there was a high chance that the treatment would cure them.

PS. It turns out that there’s a commentary article with a similar title. This one (and full text is available) looks at cancers generally (the previous one was specifically related to advanced ovarian cancer): Maurie Markman, ‘Does Palliative Chemotherapy Palliate?’” title = “Read full text article”, Commentary, Journal of Supportive Oncology, Vol 1, No. 1, 2003.

A friend yesterday asked me how much my chemo treatment is costing me. No-one else has asked about this. Perhaps this friend asked because he lived in the US for 5 years.

The answer is: Nothing.

Some visits to the GP and specialists, tests (like the ultrasound scan, CT scan and bone scan) were/are charged at “private” rates, meaning that I have to pay part of the fee, and Medicare pays or reimburses the rest.

I have private hospital insurance (but no private medical insurance). For surgery, I was in a private hospital. The hospital itself had a $250 excess I had to pay, plus $20-odd for some drugs to take home.

I have to get prescriptions for Tamoxifen filled every month. Each one costs me $30-odd. And I’ve bought a few packets of over-the-counter pain killers.

I haven’t added it up, but the total out of pocket costs since I started this whole mess, including surgery in hospital, is maybe $1800.

Chemo treatment itself involves blood tests, visits to the medical oncologist, anti-nausea drugs administered before chemo, the chemo drugs themselves, administration of the chemo, and drugs to take home. Within the chemo day room, there are 6 chairs and 5 or 6 nurses, so almost a 1:1 ratio. Each time chemo is administered, I’m visited by a dietician and the pharmacist. I have access to a psychologist and a social worker whenever I choose.

This costs me nothing.

In other parts of the world, cost affects cancer patients directly. The Mayo Clinic, for example, recommends considering the financial costs of treatment when making treatment decisions. So does the American Cancer Society. And the US National Cancer Institute

I’m not suggesting that, even in Australia, getting cancer has no financial effect. I’ve earned almost nothing for 4 or 5 months, and have little prospect of working more than 1 week in 3 for the next several months. But at least the cost of treatment itself is not, ever, a factor in my treatment decisions.

There’s an interesting article about the costs (to government) and tradeoffs (to patients, in quality of life) at Medscape (it’s one of those idiotic sites where you have to create an account to sign in, but it’s free to do so).

Chemotherapy is delivered once every 3 weeks. Chemotherapy isn’t like most medicine. It doesn’t make you feel good. It makes you feel sick.

I spent most of the first week after the last treatment in bed. The second week I was up and about, but couldn’t really do much. In the third week, I feel much better, and can get on with things.

So, I have one week in which to:

• try to do some work to earn a living
• catch up with friends
• do the shopping
• do chores around the house that I can’t manage when I’m not feeling well
• fit in doctor’s appointments other than those immediately related to chemotherapy
• clean out the mess that is my email inbox
• work on cleaning out my house and ‘putting my affairs in order’ as novelists might say
• live.

One week in three. I want to write that I should “make the most of it”. But I have no idea what that actually means.

It’s 10 days since my second cycle of chemotherapy. On Monday this week, 5 days after the chemo, I felt as sick as I can imagine sickness to be. Today, 5 days further on, I’m up and about and doing something useful.

I had been told that everyone reacts differently to chemo, but that the first cycle or two sets up a pattern that you can then expect for future cycles.

So the pattern seems to be:

• Day 0, the chemo day: I feel fine
• Day 1: In the morning, I’m still “up” from the steroids, and feel OK to start with. At some point in the late afternoon or evening an invisible person sneaks into my house and hits me on the head with a large solid object. One moment I feel OK; the next I can do nothing but repair to bed.
• Days 2 and 3: In bed most of the time. Feel bad, but the worst is yet to come.
• Days 4 to 6: Shithouse
• Days 7 to 10: Getting better. Up out of bed more each day, but still very tired. Can’t work yet.
• Days 10 to 20: Can probably start working, and in the last 5 days I feel quite OK.

So next time round, on those really bad days in the middle, I have to try to remember that there are 3 days of absolute horror, and that I will then start to feel better.

Of course it might all feel entirely worthwhile if I thought this was actually going to cure me. But it probably won’t. It’s probably just buying time.

From the strange-things-you-find-when-learning-about-cancer department.

The New York Times reports on a study of patients with brain cancer or multiple sclerosis in the US:

Women in the study who were told they had a serious illness were seven times as likely to become separated or divorced as men with similar health problems, according to the report published in the journal Cancer.

Actually there are two strange things here:

1. Couples split up all the time. For the length of time covered by the study, the study says you’d expect that 11.6% of couples would separate. The study found that, when a wife is diagnosed with cancer or MS, 20.6% of the couples split up. When the husband was diagnosed with cancer or MS, only 2.9% of couples split up. That is, men are more likely to abandon a sick wife than in the general population, but–astonishingly–women are less likely to abandon a sick husband than in the general population.
2. The article’s abstract states:
   

   Divorce or separation occurred at a rate similar to that reported in the literature (11.6%). There was, however, a greater than 6-fold increase in risk after diagnosis when the affected spouse was the woman (20.8% vs 2.9%; P < .001).

   But the New York Times’ article says women were seven times as likely to become separated or divorced.

   Why did the NYT exaggerate and turn 6 into 7?

I’m glad I never married.

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.