Friday, January 25, 2013

A Hard Rain's A-Gonna Fall

Day 47  

General status update:

Hair: Now confined in today's fashion statement - a cutting edge Smurf hat, headband and snood combo, in which I now look less nativity play extra, more Suleiman the Magnificent. Or so I like to think. So very glad none of you can see it.

Nausea demon: almost as crushed by yesterday’s annihilating defeat at the hands of the Chemo Muse as was Roger Federer today, after losing in the Aussie Open semi-final to Andy Murray. He doesn’t have to wait for the next Grand Slam to get his revenge, though – just to bide his time until the inevitable post-steroid crash comes tomorrow.

Chemo Muse: Happy for once, after extracting 3, 676 words out of me yesterday, my longest ever blog post. She even let me go shopping this afternoon.

 Chemo Brian: Delighted at the arrival of his new familiar - a hand-knitted Chemo Brian taking the form of a small rodent, and thus uniting two of the main themes of this blog. Chemo Rat Brian (see below) is now established alongside his namesake on the sofa.

Fatigue/weakness: Cancelled by steroids until tomorrow; the supply of Dexamethasone has now ended, and hard times are likely for next the few days.

Sleep, lack of: steroid–fuelled sleeplessness last night until 3am. Yawn.

Anxiety level (1-10): The next week is likely to be very unpleasant indeed, but it’s not so much anxiety any more as resigned dread based on the experience of the first two chemo cycles.

State of mind: Into the chemo groove, man. Not lovin’ it. Not lovin’ it one tiny little bit.

 
Chemo Rat Brian, now in situ on the sofa - courtesy of @fionalaird
 
 
Chemotherapy treatment is administered in ‘cycles’, which vary in length according to your particular condition and the type of chemo regimen you are on. My own chemo regimen, FEC, is running for 6 cycles of 21 days, as shown in the diagram below:

Example 1: a six-cycle course of chemotherapy

Day 1
Days 2–21
Cycle 1
Chemotherapy
Rest period
Cycle 2
Chemotherapy
Rest period
Cycle 3
Chemotherapy
Rest period
Cycle 4
Chemotherapy
Rest period
Cycle 5
Chemotherapy
Rest period
Cycle 6
Chemotherapy
Rest period
Total
18 weeks
 

You only receive chemotherapy on one day out of the 21; days 2-21 are what is euphemistically called the ‘rest period’.

That doesn’t sound too bad, does it?
One day receiving chemotherapy – in my case, for this cycle, Wednesday 23rd of January, a date which will live in infamy in my memory, at least, and then a 20 day rest period – how hard can it be?

Well….according to the Royal Marsden Hospital’s guide to chemo, ‘the rest periods allow your body to recover from any unwanted effects of the drug/s’

That’s one way of putting it.

Another might be to say that the ‘rest period’ is when the drugs wreak their havoc on the rest of the body, as well as mopping up any stray cancer cells circulating in your bloodstream, looking for a new home to go to (chemo is sometimes used to shrink large tumours before surgery, which is called neo-adjuvant therapy; in my case it is being used as insurance, to destroy any cancer cells that might still be rampaging around my system after the tumour has been removed; this is called adjuvant therapy).

The ‘rest period’ might more accurately designated as days 2 and 3 of the cycle, during which the body is protected from the worst ravages of the poison by the steroid drug Dexamethasone, which causes hyperactivity and sleeplessness, but also prevents the most unpleasant effects of the chemo toxins from making themselves felt.  

Then the Dexys stop and the post-steroid crash comes: all bets are off and the chemo drugs can unleash their Dogs of War. Day 5 is usually the worst, and the days following are horrible; by about day 10 or 11 you start to feel vaguely human again.  

There’s the thing: after a couple of times you begin to recognise the rhythm of the cycle, the steps of the dance leading you along to the Bad Times. It is one of the few occasions in life when you are able to predict, with a fair degree of certainty, that you are going to be feeling Very Bad Indeed for a certain period of time. You don’t just wake up one morning feeling lousy – you can put in your diary that from 26th January to 6th February 2013 you will be troubled by nagging pains in your stomach, nausea constantly struggling to break through the barrage of anti-emetic drugs you are throwing at it, overwhelming weakness and fatigue, and a strong feeling of general internal toxicity.  

That’s the basic set of side effects, anyway – in my case. Others experience it differently, with variations on the theme. 

Oh, and not forgetting that in the second week of the cycle you will have no immune system to speak of, because the chemo destroys the good cells reproducing in your bloodstream as well as the bad ones, so any infection you pick up will be at best dangerous, at worst lethal, and is likely to result in re-hospitalisation.

But this I know, now I am familiar with the rhythm of the chemo cycle: as the effect of the Dexamethasone begins to wear off tomorrow, horrible things are going to start happening, and there’s absolutely nothing I can do about it, except sedate myself with Lorazepam if it gets too much to bear. 

The second cycle was much worse than the first, and I’m told the third cycle is as bad as it gets, and that is probably why I was weeping on Wednesday morning when we were walking down the Fulham Palace Road to the hospital – I knew then, as I know now, that a hard rain is going to fall.



4 comments:

  1. Welcome to Chemo Brian, who looks very at home on the sofa. And a handsome lad he is too! I only wish that I were more skilled with a pair of needles, so I could offer your a couple of knitted Dexys (perhaps one called Geno?) to sit alongside him.

    But seriously, all the best to you for cycle 3.

    Bee

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  2. A "chemo crash bad attitude" google search, brought me to you. Hope that makes you smile. curious where you are now. how you are. i'm crashing from the steroids after infusion #3 but for rectal cancer. Two years ago it was breast cancer. and yes, I hate pink. and yes, I hate chemo. and none of this makes any sense.

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    1. Later on I got them to taper off the steroids more gently and it was MUCH better. Just had a look at your blog, and my thoughts are with you xx I'll be posting an update on the blog later this week as I did abandon it rather suddenly during My Summer Of Hell, and people have been complaining. Feeling considerably better now - touch wood.

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    2. Oh, and it really made me laugh that googling 'chemo crash bad attitude' brought up this blog - excellent!

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