Sunday, 6 May 2012


I wish I had something profound or exciting to tell you. However, unless the idea of someone becoming Rip Van Winkle is your idea of entertainment, you may as well stop reading now.

And by the way, next time I read the advice in The Big Book of Cancer Leaflets, I’ll try to remember that the predictions about side-effects are serious – but as to the adivice on managing them? The kindest thing I can say is that someone meant well.

For example: Thursday, the second day after I stop the steroids, I wake up with aching joints and a headache drilling its way behind my eyes. I open my eyes to a narrow squint, heave myself upright and swing my legs over the side of the bed. I plant my feet and wait until I can (more or less), feel the carpet, otherwise standing will cause me to lurch sideways. This particular morning, when I make the transition from sitting to standing, my body feels like it’s filled with wet sand. Jupiter gravity.

Coffee, I believe, cures everything, so I trudge to the kitchen, boil the kettle and brew a cup. Half-way through drinking it, my eyes are still in a headache squint, my joints still ache and I’m still Jupiter-weight. I make an executive decision: The fatigue wins. I will go back to bed and stay there. I will not get out of my pyjamas. I swallow two ibuprofen extra strength, and crawl back under the covers, intending to read. The print refuses to come into focus, even with my reading glasses on. I cover my left eye and the print clears. I cover my right eye – and sure enough, the letters blur. This has happened before on “bad” days, so I do the sensible thing – I fall asleep. And I sleep, off and on, for the next ten hours. 

Friday, the headache and joint pain are gone. I am not subject to Jupiter’s gravity. I shower and dress and Heather and I head for downtown. After errands, we drive out to a spot in Herring Cove with a spectacular view of the ocean. When we get home, I sleep. Again. 

And so it goes. Perhaps a little less sleeping as the days go on – but I’m still averaging a good fifteen or sixteen hours a day.

The advice on “handling” fatigue goes like this:

“ Try to sleep at least 8 hours each night. This may be more sleep than you needed before radiation therapy. One way to sleep better at night is to be active during the day. For example, you could go for walks, do yoga, or ride a bike.” 

Oh? And who do they know who sleeps over four hours a night while taking steroids? Going for walks? Love to – if only my feet would co-operate and stop seizing into cramps after 10 minutes. This is great advice for the one in a hundred who might have only one side-effect out of dozens.

“Plan time to rest. You may need to nap during the day. Many people say that it helps to rest for just 10 to 15 minutes. If you do nap, try to sleep for less than 1 hour at a time.”

Uh-huh. Just try to wake me up in 10 minutes. I've set my alarm (only a foot from my pillow) and failed to hear it.

And the really good news is:

“Fatigue can last from 6 weeks to 12 months after your last radiation therapy session. Some people may always feel fatigue and, even after radiation therapy is over, will not have as much energy as they did before.”

Oh, piss off! I don't have time for this. I'll allow a month. And then, whatever it takes, it's over.


tinybeads2004 said...


so sorry about the fatigue and pain. You are doing the right thing - resting. It's horrible to give up even a moment of wakefulness to these side effects.
The good days when you can run errands and go to the beach will hopefully increase over time.

How ironic that the cancer treatment pamphlets have been written by people who either haven't undergone the treatments themselves, or haven't listened to people have have gone through the treatments.

I'm frustrated enough on your behalf to suggest sending a link from this blog post to the company which writes the pamphlets to suggest that more realistic information be given to their clients. but ... naaah.

you, rather than use your energy to re-state the negatives, are determined to heal and to kick this stuff out of your way. Go for it. Build all the positives you possibly can into every day. I'm part of your cheering squad. Whatever it takes, I'm with you.
Mary Alexander

Howpublic said...

Mary - for certain, I often think the advice was written years using Johnson's baby shampoo after radiation (which is chock full of chemicals). Unfortunately doctors get no training on nutrition or complimentary medicine etc. It's what's difficult about western medicine - that it's mechanical...a part by part treatment. have to do your own research & persevere. It's always nice to have a cheering squad for back-up.

Anonymous said...

Hi Girl,
Come sleep in the Port! We will wake you for star gazing, dinners on the deck, and general merriment. The rest of the time you can sleep to the sound of the sea.
Come soon!