Demon Lovers

Day 104 

General status update

Fatigue/weakness: it’s that part of the chemo cycle now – the second week is essentially no immune system and no strength - and by the end of quite an energetic day out yesterday, I was practically on my knees. Climbing up the steps to the exit at Hammersmith Tube Station, which in normal times I would trot up at a rapid clip, was almost too much for me last night. I clung on to the railing, and R took my other arm, and I went up very, very slowly, one step at a time, and had to rest at the top. Yes, you’re right, I should have found the lift and gone up in that, but it didn’t occur to me that walking up a flight of stairs was going to prove impossible without assistance. I just forget that the chemo is still in charge of my body for the moment.

Today I’m very, very weak and lying down, mostly. As Matron Becky warned me it would, the fatigue and weakness is increasing every cycle. I’ve still got mental energy but my body has taken a big hammering from the chemo drugs now, after 15 weeks, and there’s still more to come. Next time, I’ll find the lift. And in 5 weeks’ time I’ll be in the swimming pool, starting to make myself strong again.

Chemo Brian: we’re having a lovely day on the sofa together, which is by far the best thing to be doing in this miserably inclement weather, anyway. Outside there is a biting wind, and driving sleet. Lovely. Like me, Chemo Brian was completely blown away by the David Bowie exhibition yesterday, and we have been happily discussing all the best bits, and making plans to go again.

Nausea demon: he poured out his heart to me about his feelings for the Chemo Muse, and her apparent preference for the Despair Demon, at 5am this morning over tea, toast and my usual panoply of anti-emetic and other drugs. I feel for the poor boy, I really do, but I can’t help feeling that the Chemo Muse is way out of his league – she is a heavy duty demonic power, outranks him considerably in the infernal hierarchy, and would eat him up for breakfast. The Nausea Demon is a well-meaning but low-ranking chap, doing a useful job that affects his victims essentially on the physical level: the effects of what he does can be horrible, but he doesn’t get to mess with people’s minds, or leave long-lasting effects.

The Despair Demon, however, is a Very Nasty Dude Indeed: hugely powerful (with influence extending way beyond the area of chemotherapy treatment), he crawls inside people’s souls when they’re at their very lowest, and makes them feel incapable of continuing their existence. He is the Blotter Out of Hope, the voice in your head on a sleepless night at 3am which reminds you of all the ways in which you have failed, and will continue to fail, and makes you reconfigure your view of everything about your life to the most negative possible perspective.

He’s perfectly charming off duty, mind, and seems prima facie a much better match for the Chemo Muse: they could be a serious Power Couple, the Posh and Becks of the Chemo Demonology, no question.

this is  one of the milder versions of  what you get if you put the expression 'demon lovers' into Google images

Anxiety level/insane euphoria (+/- 1-10,000): down to one steroid table a day now, but still pretty speedy. Am so going to miss the Dexys once the chemo is done...

State of mind: Excellent. We had such a wonderful today yesterday, there’s only one more chemo to go, we are making plans of various kinds, soon the cancer will no longer own me.

Hair: I think it may have thinned out a bit more than I’d realised, because I put it in a pony-tail today and it seemed somehow – smaller. But you honestly can’t see any difference, otherwise. Given that we’re now 15 weeks in, and there’s only 4 1/2 more weeks of chemo to go, it is starting to look as if it’s going to make it through relatively unscathed. Who would have thought it? In the interests of full disclosure, I should reveal that whilst my eyebrows and lashes have also remained intact, there is now no hair at all on my arms or legs (although there wasn’t much to start with) and my nether regions have acquired what can only be described as a Chemo Brazilian. 

MamaFo: she rang earlier from her fortified redoubt in the Tramuntana Mountains to say how pleased she was we had enjoyed the David Bowie exhibition so much, and to give me her views on the importance of Bowie’s influence on popular culture; she even said she was minded to leave her mountain top eyrie for the first time in years and come back to London to attend the exhibition herself, which astonished me, since she has refused to fly for several years now because of her objections to aggressive airport security and not being allowed to smoke.

She added that it was also good to hear that the drugs clearly enhanced my appreciation of the audio-visual spectacular, which would perhaps make me realise that I have previously been unnecessarily uptight about the question  of recreational drug use. I agreed that it has been an education, and I am now feeling a whole lot more flexible in that area. 

NB:  for newer readers:  MamaFo is 82 and a real person, not one of the voices in my head. She just SOUNDS unreal. She is the defining example of the expression ‘you couldn’t make it up’.

Very weak today – see above – so just waving to you from the sofa where I am ensconced with Chemo Brian, my new knitted throw, and a pile of books and magazines. BTW I have just started reading the short stories of Edith Pearlman, kindly given to me by R after I mentioned how ecstatically they had been reviewed everywhere, and it turns out they have been ecstatically reviewed for a reason: Edith Pearlman is beyond brilliant.

Have a good weekend…

The Chemo Demonology

Day 6

General status update:

Nausea: ad nauseam

Hair: far too scared to touch it, in case it starts coming out in clumps

Bones: aching

Digestion: perfectly fine, thank you very much

Strength: dissipating

Anxiety level (0-10): β- - /γ + (+)?

State of mind: blooped (that’s a special chemo word - please don’t ask me to define it further)

 
 

At this point in my first chemo cycle, the true terror lies in simply not knowing what is going to happen next, which of the many possible Chemo Demons will come and strike, probably in the watches of the night, when I am least able to resist. The battle horde of the Chemo Demons is mighty, and the weapons in their armoury of torture both various and intricate: their fearsome leader Chemosh, God of the Moabites, turns up at an early stage in Judaeo-Christian demonology, and features in Book 1 of Paradise Lost:

 

Next CHEMOS, th' obscene dread of MOABS Sons,
From AROER to NEBO, and the wild
Of Southmost ABARIM; in HESEBON
And HERONAIM, SEONS Realm, beyond
The flowry Dale of SIBMA clad with Vines,
And ELEALE to th' ASPHALTICK Pool.
PEOR his other Name, when he entic'd
ISRAEL in SITTIM on their march from NILE
To do him wanton rites, which cost them woe.
Yet thence his lustful Orgies he enlarg'd
Even to that Hill of scandal [the Mount of Olives], by the Grove
Of MOLOCH homicide, lust hard by hate;
Till good JOSIAH drove them thence to Hell.
                                                                   

                                                                        John Milton, "Paradise Lost", Book I

 

The first arrival, the Nausea Demon, has already been in situ all week, squatting astride my stomach like a hideous incubus, impossible either to detach or ignore:

  

 

 

For some people the nausea begins to abate after Day 3, but unfortunately that hasn’t yet happened for me; the nausea is controlled by a variety of drugs, but is still all-pervasive, and there is no sign of it going away any time soon.  

The Nausea Demon arrives first, presumably, because of the stomach’s centrality, and immediacy: the other demons come later, because it takes time for the toxins of the chemo to seep through to the outer reaches of your body, permeate and poison its extremities, and produce slower, and deeper, effects. I know that my hair is unlikely to start falling out until at least next week, but already I am afraid to touch it with a comb or a brush, in case it starts suddenly coming out in clumps. My bones have begun to ache today, a little, and I’m feeling weak and tired – the intense steroid-fuelled activity of earlier in the week is no longer sustainable, and I’m starting to wonder if a little of the fuzziness of Chemo Brain

 – of which there will be more discussion later, as the Chemo Brain Demon is one of those I fear the most  –

 is starting to creep in around the edges of my consciousness. I couldn’t remember the name of the television programme ‘Seinfeld’ today, and could only think it was called ‘Kramer’ – but maybe that was just the result of a fairly difficult and trying first week of treatment. Or middle age.

This, however, is just the first week of the first cycle - the effect of the toxins in your system is incremental, as the poison slowly builds up: it’s going to be a long, long party for the Chemo Demons, and they say that the third cycle of FEC is the one that really, really hurts. This leads me to wonder why no one ever mentions the remaining cycles after that, cycles 4-6:
 

 WHAT HAPPENS THEN, FOR GOD’S SAKE ???
 

 As of yet, I simply haven’t had the courage to ask.