Sunday, January 6, 2013


Colonel Mustard, via the IV catheter, in the Chemo Ward.
 
 

 Day 28:  

General status update 

Hair: Out of snood, washed, very gingerly combed, shiny, and still adhering to head, for the time being. Hair very pleased with itself. Others in my Virtual Chemo Cohort who started chemo in December, and didn’t use the cold cap, have already lost their hair. This means either the cold cap is working, and at the least delaying the hair loss, or my hair just likes poison.

Nausea demon: His early morning raid, catching both me and the meds on the nod, was a huge success. He’s made it a truly horrible day. 

Chemo Muse: Even she was struggling today.

Chemo Brian: Sitting in the corner, whimpering to himself – he's an easy-going kind of guy and he REALLY doesn’t like  this kind of unpleasantness.

 Sleep, lack of: A decent’s night sleep, until the early morning alarm call from the nausea demon .

Anxiety level (1-10): profound; bottomless, even. 

State of mind: Grim. No other word for it. Day 5 is one of the worst days of the chemo cycle for everyone, it seems, whatever chemo regimen you’re on.

 
I am jolted awake well before 7 am by a sudden and violent visit from the nausea demon, the first time this has happened: he is up, and raring to go. I leap out of bed and rush to the kitchen, rapidly take all the meds, scarf down a couple of mouthfuls of food (no choice – you need it to help digest the meds), then go into the study and sit down at the computer, glugging Diet Coke from the can, praying that it will all stay down; meanwhile I start wailing on Twitter, because I am beside myself, and it seems mean to wake R just to tell him how sick I am feeling. It’s not as if there is anything he can do about it.

Early-rising, and differently time-zoned, Twitter friends offer me immediate sympathy, which helps ridiculously much. On Twitter you’re never alone: there’s always someone, somewhere awake out there to hear you moan. 

This is Day 5 of FEC2. To deal with the nausea this cycle, at the hospital I was given intravenous Fosapprepitant and Ondansetron (anti-emetics) and Dexamethasone (steroids which help with nausea). At home, I am taking orally Ondansetron, Dom Peridone and Cyclizine. I was also taking more steroids, but those finished on Day 3.

All that, and I am still as sick as a dog.

 But it’s 8.08 am now, and I’ve managed to keep everything down, just, so it will ease off soon, it will. Keeping the meds down is the important thing, because once you’re actually vomiting, you’re lost. The key point about anti-emesis is pre-emptive strikes to prevent the waves of nausea you’re riding from breaking into actual vomiting. That’s when you’re in real trouble: you can’t control the nausea by taking pills, because you just vomit up the pills. And then there is nothing for it but to go back to the hospital for IV treatment, to get the anti-emetics pumped straight into your bloodstream. But I’ve already had to do that once this week, and I really don’t want to have to do it again. 

Twitter helps a lot through this time of extreme unpleasantness, as much as anything can: soon I am involved in one discussion on photographing dogs in snoods, with my friend Emma, in Brussels, aka the magnificently insane ‘Death, despair and biscuits’ blogger  Belgian Waffle, and another with my friend Jonathan, in Seattle, on the possibility of chemo-related spontaneous combustion, and whether nipple-tassel twirling should be high-lighted in the Big Red Book of Chemo as counter-indicated during chemotherapy treatment, what with the risk of it exacerbating the nausea, and all.  

From up in the Hebrides, where it’s still just getting light, @LadybirdFi tweets me a picture she has just taken of a staggeringly beautiful Hebridean dawn. Then I notice that @aliceturner, who has just suggested a rodent snood-shoot with her pet Jason (type of rodent as yet unspecified) has a web-site called Afternoon Outings, selling beautiful hand-made cards detailing walks around Hampstead, Spitalfields and Bloomsbury.  These look so perfect I immediately order all three: R and I can go for a walk round Hampstead as a treat in week 3 of the cycle, by which time I will be feeling much better.
 
I will, I will.  

That’s what they tell to you to do on FEC: when times are bad early in the cycle, hold on to the thought that you will feel relatively OK by the third week, when the effects of the poison will have died down somewhat, and your immune system recovered a little, and make plans to do nice things during that week, before your next trip to the chemo ward. This forward planning helps to keep you going through the long dark nights of the soul, and the body, earlier on.


By now it’s 8.39:  the nausea is abating very slightly, I can’t afford any more internet retail therapy, and I need to find something else to think about. The Chemo Muse whispers into my ear that it’s time to do something a bit more constructive than exchanging chitchat on Twitter, and reminds me of something I noted for later follow-up the other day about the different chemo drugs. Now would be a good time to do that following up, wouldn’t it?

The Chemo Muse sits back with a self-satisfied smile, having got me usefully occupied again. She’s good, I have to give it to her. She’s good.

 
……

 You are not going to believe this.

 The point that I noted the other day to follow up was an odd phrase I saw linked to one of the 3 FEC drugs I am taking – the ‘C’ in FEC, which stands for Cyclophosphamide, was somewhere alluded to as a ‘nitrogen mustard’. This made me think of mustard and cress, and fertiliser: I was curious, wondering if Cyclophosphamide was perhaps distilled from the leaves of mustard and cress - many potent pharmaceuticals are derived from plants, after all.

 
 
Oh, how wrong can you be…
 
Let Wikipedia explain: 

‘The nitrogen mustards are cytotoxic chemotherapy agents similar to mustard gas. Although their common use is medicinal, in principle these compounds can also be deployed as chemical warfare agents.

As with all types of mustard gas, nitrogen mustards are powerful and persistent blister agents and the main examples (HN1, HN2, HN3) are therefore classified as Schedule 1 substances within the Chemical Weapons Convention. Production and use is therefore strongly restricted.’

Remember mustard gas? From the First World War and, more recently, the horrors that Saddam Hussein inflicted on the Kurds in northern Iraq during the 1980s?
 
That’s essentially what they’re injecting into my veins every three weeks: mustard gas, in liquid form. A chemical warfare agent. Its therapeutic potential was discovered during the second world war, when autopsies of bodies exposed to mustard gas bombs revealed that ‘profound lymphoid and myeloid suppression’ in the victims had occurred after exposure to mustard gas.

‘It was then theorized that since mustard gas all but ceased the division of certain types of somatic cells whose nature it was to divide fast, it could also potentially be put to use in helping to suppress the division of certain types of cancerous cells.’
 
And that, dear Reader, was how the great and wonderful story of chemotherapy treatment began.
 
 

 And to think I used to imagine I was living a bit close to the edge by taking an extra Nurofen Plus…

2 comments:

  1. Oh dear - I was getting ready to tell you that I had some fabulous mustard greens the other day but then saw that you are turning into Agent Orange. I could talk about my mustard shoes instead! Or just say that I spent 7 hours in front of the video screen yesterday with my own chimney and furry critters, in the conservatory. So it's solidarity after all:-) Hugs of love, xxx

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  2. I used to love those mustard greens in Ayvalik market...
    I'm holding on to the thought that I may be able to make a short visit in the spring after the chemo is finished - preferably during the artichoke season.

    I want to go and sit under the grapevines at the lokanta and eat their artichokes with broAd beans and dill, and the barbunya, and the nohut and the ezogelin.. (not all at once, obvs)

    And I gather the Cafe Caramel has relocated, and you can now sit and drink's Yasemin's insanely good hot chocolate, by the light of the wood-burning stove.

    Not next year in Ayvalik: THIS year in Ayvalik - inshallah.

    BTW, You still haven't explained how you come to have a dog, T.

    YOU COULD HAVE HAD FREDDIE..

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