Wondering what to make of life before the Necessary End

Some time ago I decided that I wanted no recorded music at my funeral.

I’ve changed my mind.

I’ve decided I’m going to have a lot of fun choosing the music for the funeral. Mostly, I suspect, it will be music that I learned to care for when I was young: as a teenager, and perhaps in my early 20s.

(Does that make me an old grump unable to move with the times? Possibly.)

The one thing we will, need, though, is a decent sound system. Not some tinny little sound from an MP3 player and a bad set of speakers.

I wonder if good old Staging Connections does funerals?

Two years since diagnosis.

Then, I felt terrible. I was bloated with ascites and thus in mild, though constant, pain. I didn’t know what was happening to me. I couldn’t eat much. I was frightened by things out of my control, by the medical system, by the uncertainties.

And now? I feel terrible. I did my fifth cycle of Caelyx 10 days ago and have felt very bad for nearly a week. I am in moderate to severe, and constant, pain, and have tried all the pain killers at my disposal to little effect. My abdomen continues to be more and more distended. I can’t eat much. I feel like things are happening in my insides, but in spite of several recent blood tests and scans, I don’t feel like I know what’s happening to me because things seem to change rapidly. I’m frightened because it’s all out of my control and uncertain.

I feel like I’ve been through so much in these two years. Surgery, blood tests, scans (I think I’ll glow in the dark soon!), doctors’ visits, chemo, biopsies, drugs. Can’t wear good clothes. Can’t wear high heels. Can’t run up a set of stairs. Can’t go to the supermarket on my own. Swallowing pain killers every day, and now the indignity and pain of two self-administered injections a day.

My quality of life deteriorates daily.

Are we having fun yet?

I suppose there is an entire area of scholarly research about pain. And I suppose the pain experts have sophisticated ways to categorize and understand, perhaps even measure, pain.

But I’ve been thinking a lot about pain recently, and I’ve developed a little taxonomy to help me think about what’s happening. As taxonomies go, it’s conceptually suss. But it will do for the moment.

1. Exogenous pain
   1. Mechanical pain

      This is pain caused by doctors and nurses doing blood tests, giving injections, inserting cannulas, removing cannulas, prodding and poking to feel whatever it is they think they can feel.

      It includes the pain from injections of local anaesthetic, which surely hurt more than any procedure they are designed to numb; and which, 8 or 9 times out of 10, don’t numb the subsequent procedure anyway.

      It includes the back pain that comes from lying on ones back on narrow, flat stretcher-type contrivances for CT scans or heart scans or bone scans (except at MIA at Freemasons: why do they, alone, have a clever Toblerone-shaped thing to put under my knees?)

      And for the last few weeks, it has included twice-daily injections of Clexane.

      So this is pain largely caused by devices. It’s intensely painful, short-lived, and the direct cause of any one pain is immediately apparent.

   2. Consequent pain

      This is the pain caused by treatment, notably chemotherapy.

      In the two weeks after chemo:

      • For some days, every nanometre of skin hurts to the touch. It hurts to wash my face, to wash my hair, to put on clothes, and hurts spectacularly to roll over in bed at night.
      • For about 10 days, I have intense pain in my abdomen. It changes in intensity, location and ‘feel’ (throbbing, stabbing, cramping) over time. It changes with position (sit, lie on this side, lie on that side). But overall it’s constant. After a week or so, it reduces in intensity.
      • For a couple of weeks, my hips and back hurt. The hip pain is intense, concentrated, and takes up 99% of available brain space, thus preventing anything else—including sleeping—from happening. Even with pain killers, there are times I can’t find a position without feeling that there are knives stuck in my hips.
      • One side of my head hurts a little, feels heavy, and lopsided. At its worst, for several days, my head feels like it may topple off; I can’t sit or stand and must lie down. When moderate, for nearly a week, I can sit, but can’t think clearly. Milder, for another week or so, it’s annoying and takes up brain space, prevents my doing anything useful, but doesn’t physically hurt.

      In recent times, Panadol has failed to resolve this post-chemo pain and I’ve resorted to tougher pain killers, along with their side-effects.

      Consequent pain now includes post-injection pain after Clexane. If I’m lucky, an injection site hurts to the touch for maybe a week after the injection (that’s why one is advised to rotate injection sites). If I’m unlucky I get a whopping bruise. I still have the bruises from the first injections, nearly three weeks ago.

      Consequent pain includes the 24 hours of gut-wrenching pain after a CT scan, caused by the contrast dye stuff one has to drink.

      In recent times, consequent pain has included pain in my right arm where, according to one of the doctors, a vein has been damaged by chemo or a blood test or some other stainless-steel-and-plastic-in-vein procedure that caused considerable pain and an inability to carry anything heavy in my right hand. (But, as she predicted, it does seem to be getting better without any intervention.)

      So consequent pain is caused by treatment or diagnostic tests. It ranges from mild to intense, lasts days to weeks, and the cause of the pain can be assumed only indirectly.

2. Endogenous pain

   Endogenous pain is the pain caused by the cancer. In practical terms, it’s the pain that remains just before each chemo infusion, after the effects of the last infusion have worn off.

   I have two main kinds of this pain:

   • Diffuse abdominal pain, which at its best is not intense or worrisome, though it grinds down the soul after a couple of days. Panadol is enough to keep this in check.
   • Hip and back pain, which seems to flare up randomly and can seriously affect my capacity to get out and about and do things. Only serious pain killers have significant effect on this pain.
   • Break-through abdominal pain, which can be severe and concentrated, but only lasts a moment (for example, as I yawn) or a few minutes (eg when I roll over in bed at night). It can hurt badly, but neither is particularly distressing.

In the next few days I’m going to think more about this pain categorization, and what effect it might have on some decison-making.

Clexane (enoxaparin sodium) is an anti-coagulant—what’s commonly known as a ‘blood thinner’.

It’s self-injected twice a day.

Each injection causes extreme pain. The pain occurs not so much as the needle is inserted, but as the injection itself is given and for anything from 5 to 20 minutes after the injection.

It is barbaric.

Clexane is made by sanofi-aventis (it eschews capital letters).

There’s not much an individual can do about a multi-national pharmaceutical company. But I do observe that sanofi-aventis makes or distributes the following products and brands of over-the-counter products or what sanofi-aventis coyly calls ‘Nutraceuticals’. I will never buy any of these products or brands:

Products

• Mersyndol
• Phenergan
• Telfast

Brands of nutraceuticals

• Betadine
• Bio-organics
• Cenovis
• Golden Glow
• MICROgenics
• Nature’s Own

I’ve decided I’m not going to do any more Caelyx, and maybe no more chemotherapy of any kind.

Cycle 5 of Caelyx

When I started my current lot of chemotherapy with Caelyx (aka Doxil, aka Pegylated Liposomal Doxorubicin) back at the beginning of June, the plan was to do 6 cycles, then assess whether it had done any good, and then maybe 1 or 2 more cycles.

As the cycles have worn on (I’ve just done my 5th), and my CA-125 marker continued to rise (at last count, 7,000-odd), and CT scans showed the tumours continue to grow (by about 0.5cm every month or so) there was discussion about whether I should continue.

I was keen to keep going with Caelyx because (a) I didn’t want to cross out another drug on the list and (b) because there is some belief, fostered by its manufacturers, that it takes at least 4 treatments to have effect.

My experience with Carboplatin last year was that each cycle followed much the same pattern of side effects. I could predict how I would feel on certain days of the cycle, and plan accordingly. In general, each cycle was easier than the one before.

My experience with Caelyx has been that there has been a much less consistent pattern of side effects. Sometimes the bad days start a few days after the infusion; sometimes not for a week after that. And, in general, each cycle has been harder than the one before.

This last cycle was incredibly difficult. I was in considerable pain. For the first time since surgery nearly 2 years ago, I took the really tough pain killers. For three days I hung about the house unable even to read or watch TV. Even now, nearly 3 weeks after the infusion, I’m still impossibly tired, in pain and utterly miserable.

General miserableness

The miserableness is not helped by other recent developments that have left me unable to do much at all.

• Breathlessness leaves me unable to walk far other than on the flat, very slowly. It ’s difficult to pick things up and put them down (eg in a supermarket or carrying things up or down stairs at home).
• Back pain prevents me from standing for long.
• My left leg, which looks utterly disgusting, prevents me from getting dressed in any kind of formal way. I haven’t worn a skirt or high heels for months—and I have a wardrobe full of nice suits, and about 8 pairs of brand new high heeled shoes, but I can’t wear them.
• The ups and downs of good days and bad days makes it very hard to plan to do even the simplest thing. I have to warn anyone with whom I make an appointment that I might have to cancel at short notice.

Quality of life is deteriorating rapidly.

Clexane

Three weeks ago, on top of this, came Clexane: the twice-daily injections to prevent further blood clots. As I wrote yesterday, Clexane is barbaric.

Where to from here?

So the last few weeks have not been fun:

• The last Caelyx cycle was very hard to take.
• I can’t do much.
• Clexane was the last straw.

It got me wondering why on earth I’m doing all this.

The first decision is easy: no more Caelyx.

This last cycle was just too much. I’m not going through that again.

The doctors don’t know this yet. I tried to change my appointment to see the medical oncologist yesterday, but for one reason or another that didn’t happen. So she won’t find out till my scheduled appointment next week.

Whether I’ll take on any other chemo drug remains to be seen. I spent some time yesterday investigating 8 drugs that I know are used for recurrent ovarian cancer. None is likely to work: they have response rates of about 20%, which is a polite way of saying that 80% of patients get no benefit. Some have what is (to me) the unacceptable side effect of alopecia. Some I suspect may not be suitable for me given the pulmonary embolisms. Frankly, none sticks out as one that looks promising from my point of view.

I am quite prepared to say ‘no’ to any further chemo.

I know that means that I’ll probably be dead in 6 months. But I’d rather a few months of chemo-free life than the sheer hell of chemo drugs that are unlikely to work.

The second decision will be harder: can I just stop the barbaric Clexane?

No more chemo!

I saw the medical oncologist today and said, as I’d prepared, ‘no more Caelyx’. I’d done it!

So she started thinking aloud about other chemo drugs. I interrupted, asking if I could tell her what my selection criteria were. “Yes”, she said.

“My first criterion is that the drug must be likely to work”, I said. Response: silence.

“That is, I’d want a drug with a response rate of greater than 50%.” Response: silence.

“So is there any point looking at other criteria?”. Response: “No”.

That’s to say, the medical oncologist confirmed the findings from my homework that there are no further drugs out there that are likely to have a positive effect. They all have response rates of 20% or 25%. Some even less than that. But they all come with ghastly side effects of one kind or another.

I worked out that I’ve done an aggregate of 52 weeks of chemo starting on 7 January last year and ending, effectively, today. So for a third to a half of that, I’ve felt rotten. For another third or so, I’ve felt very so so. And for maybe a third felt kind of OK. In recent times, the ratio of bad:good times has increased.

If I were to continue, then the drug(s) might work. They might extend my life by a short time. But there would be horrid times roughly equal to the extra time gained.

And I don’t want that! I don’t want extra bad days. I’d rather have a few good days than many bad ones.

I understand why other people would make a different decision, and why others would cling to any hope for one more day.

But not me.

So we agreed: no more chemo.

Celebration…

In some ways it’s a day for great celebration. I’ve had enough. I’ve done enough. And now it’s all over.

Since I reached this conclusion, about 2 weeks ago, I’ve tested it out on several friends. To my astonishment, the very people who were so damned gung-ho about my doing chemo in the first place, were now quite accepting of my decision.

… but also great sadness

But let’s not get too excited. This is the beginning of the end.

Only yesterday morning I felt weary and sore and miserable. I’d felt like that for weeks.

I was keen to talk to the medical oncologist about pain management. She upped the pain killers I’m taking.

I can’t believe how big a change this has made in just 24 hours. I feel like I’m a different person. Alert, awake, doing useful things, not hurting at all. Not weary, not sore, not miserable.

I didn’t realize how much the pain was getting me down.