The language of chemotherapy: Part 2 'fatigue'

Posted October 8th, 2008 by Jane

Many cancerfree people, like me in the ‘before’ days, don’t actually know what chemotherapy is or how the side effects work. I get a surprising number of people asking me: ‘When’s your chemo?’ or if they know saying: ‘good luck on Wednesday.’ They seem to imagine that ‘chemo’ is a single event at the hospital, when in fact it’s a cyclical disruptive interlude in my life. They also imagine that unstoppable vomiting is the major problem with chemotherapy. Some people are still sick on chemotherapy, a few horribly so, but generally the drugs used for breast cancer are not major ‘emetic’ drugs and the anti-sickness meds these days are just brilliant..if as much progress had been made in cancer drugs as in anti -emetics over the last ten years then cancer might well be on the way to being contolled or cured.

Even playing ‘hunt the vein’ as they have of late, the hospital bit is actually very easy, particularly with guiltily held private insurance. I sit hooked up to a cannula and a stand which holds a couple of bags of liquid dripping down into my vein. (Oh I’ve had the red stuff too that makes your wee red.) Utterly painless (there are exceptions), bit awkward turning the pages of a book or eating the egg mayo sandwiches they provide..but mainly just boring.

The day of chemotherapy is invariably a nice one for side effects, steroids keep me high and just to repeat no I am never sick (and certainly never nauseous on this one: taxol.) Mind you, touching all the wood in the world just in case cause I’m a major vomit really major.

Fatigue was not a word I used much before cancer. Then tiredness was what happened after a long day at work or a good night out and the cure sleep..simple. I was pretty much unsympathetic let alone empathetic to anyone with those mysterious conditions like ME or chronic fatigue syndrome…maybe not quite in the ‘pull yourself together’ brigade but pretty nearly there. Oh the folly of my arrogance.

And now I want to invent a dozen words for chemotherapy tirednness, like it is said the eskimos have for snow. They’d be a word for the worst kind..messing with your head, hallucinatory, depressed weeping tiredness; and another for the flacid muscle can’t stand up in the shower kind of tiredness, one for the go for a walk sit on the pavement can’t make it up the hill kind of tiredness, and another for the can’t just can’t get out of bed even though I might wet myself kind of tiredness. And another word for still being shattered after sleeping 15 deep and long hours, and opening my eyes and the effort just exhausts me. Someimes it is just ‘ordinary’ tiredness and lying down for a nap. I have got used to 9.00pm being a late night out..or up.. and not ‘doing’ anything two days running, and having little snoozes at any time…some of those seem to go with being nearly 60…so my well friends tell me and R. reminds me I’ve been falling asleep on the sofa for years.

And another thing..I get so irritated when people say how nice it must be to have ‘duvet days’ on the sofa watching daytime DVDs. Well no actually..if I’m well enough to be up during the day I don’t want to watch DVDs and if I’m not then I can’t concentrate…not on TV or a DVD or a book. Radio 4, quietly droning is all I can tolerate.

Each chemotherapy drug is a bit different..but each of them for me the worse thing is the fatigue..the posh name for tiredness that my first chemo nurse had done a thesis on. CRUK’s booklet says in the usual bland canceradvice way: ‘Fatigue for people with cancer may not go away even with rest.’ When it comes down to it even a dozen words can’t explain the debility, the listlessness, the hopelessness I feel when yet again I am ‘tired’ I’ve just done a complete 28 day cycle of taxol and the days have gone like this:

Day 1 chemetherapy. Bit tried, bit traumatised, but that was hunt the vein

Day 2 Energetic, buzzy, tearing round like a mad thing

Day 3 Energetic, buzzy, tearing round like a mad thing

Day 4 bed

Day 5 bed

Day 6 bit tired

Day 7 blood test

Day 8 as Day 1

Day 9-Day 13 more or less as Days 2-7

Day 14-20 same as Days 1-7 except bed days in the sunshine

Days 21-27 free days, supposed to be good not tired days, no drugs..just unpredictable moments of manic behaviour and…you guessed it…tiredness

I haven’t mentioned the constipation from the steroids and the morphine or the diarrhoea when I take too many sennokot…but its not as bad as the tiredness.

3 taxol down, the 4th this morning…just another 14 to go…

And yet this time tiredness hasn’t been as bad as on some of the drugs in the past..and this time the treatment feels more serious..more welcome even…more genuinely life extending…for a bit…or more. A bonus of having tumours I can feel is that I get to know when they are getting softer..and they are…a bit.. Funny how what you think you can tolerate, changes..all the time.

But how I wish I wasn’t…well..tired.