Starman

Day 103

General status update

FEC5, day 9:

Anxiety level/insane euphoria (+/- 1-10,000): the steroids are now being tapered off, and I’m slowly coming down to earth – but it’s been a lovely ride. I’m beginning to wonder if I may have been short-sighted in spending my whole life eschewing the use of recreational drugs.

Mouth: very sore this cycle – the steroids can do a lot, but they can’t stop the FEC giving me mouth ulcers, unfortunately. With this painful and hazardous combo of ubiquitous ulcers and the bad tooth, the yoghurt-based element of my diet has been increasing rapidly.

Chemo Muse: you know how she has the whole snaky hair thing going on, what with being the love child of Chemosh, God of the Moabites, and Medusa? So we’re all having dinner last night, and she’s in terrifically good, even glittering form at the moment, what with all the extra Dexys: she’s holding court and being very funny indeed, and she’s kind of flicking her hair about as she talks, it’s quite mesmerising – flick, flick, the snaky locks writhing around, sometimes towards the Despair Demon, sometimes towards the Nausea Demon – almost as if she were flirting outrageously, and playing them off against each other… Oh. My. God.

Chemo Brian: completely oblivious to all the Unresolved Sexual Tension, bless him – he couldn’t see a sexual undercurrent if it came up and bit him on the ankle. The drugs he’s spent his life doing were not performance-enhancing ones, and I fear he may now be having problems with his prostate.

PICC line (deceased): at night its lonely ghost wails at the window, in the manner of Kate Bush: ‘How could you leave me when I needed to possess you? Caroline, it's me, Cathy, I've come home, I'm so cold, let me in-a-your-window.’

State of mind: you can probably judge that for yourself.

Hair: ignored, overshadowed, depressed, but still there.

It is a truth universally acknowledged that when you put away in a safe place something important, something you are going to need in a few weeks from now, and must not on any account mislay

- like, just for the sake of argument, a treasured invitation to the Members’ Preview on Friday 22^nd March of the much-anticipated new David Bowie Exhibition at the Victoria & Albert Museum, which is going to be the biggest blockbuster exhibition of the year in London in 2013 -

then you will be sure to forget where you put it.

Yes, it is in a safe place, but a place so very safe and out of the way that you are completely unable to find it again.

I blame Chemo Brian for this.

I do not panic. I stay calm and take deep breaths. I KNOW that the invitation is here somewhere; the only problem is the other 11,967 pieces of paper, books, newspapers and magazines in this flat amongst which it must somewhere be lying. After consulting Twitter to identify the patron saint of Lost Things, I make invocations to St. Anthony of Padua and Ganesh, the Remover of Obstacles.

R has gone out to a meeting, and will be back in an hour. He is a big music buff, and so looking forward to this; today is a kind of special anniversary outing for us, followed by dinner out this evening, on a day when the chemo side effects are finally abating. It’s our big treat. If I can’t find the invitation, it will ruin everything.

It takes that whole hour, and going through every piece of paper in the flat, before I find it, right at the bottom of the last heap of papers, five minutes before R’s key turns in the door…

BUT NEVER MIND ABOUT ALL THAT,

THE BOWIE EXHIBITION IS

JUST

MIND-BLOWING!!!

It was just fantastic - the most extraordinary audio-visual experience EVER. And even better if you're on the strong drugs, like me. You're all wired up for sound in a head set, which tunes in to the music in whatever part of the exhibition you’re in, and the extraordinary costumes are all there in front of you as you watch him performing in them. 

And there are Voices in Your Head – although I'm used to that, obvs. At the end you're in a giant room with a 40' David Bowie singing Jean Genie to you. There are other people there, but it's like you're on stage with him in your own private concert. It doesn’t get better than that.

I LOVED IT SO MUCH.

I had to be physically dragged out of there finally by R - I would have had my Bowie concert go on all day. He wanted lunch. I am planning to go back at least 10 times. It is just AMAZING. And especially if you're on steroids.

Woooooh, WE CAN BE HEROES!

This video is wonderful - it's a live performance of Jean Genie from Top of the Pops in 1973, which was lost immediately afterwards, and only rediscovered in 2011.

Follow the yellow brick road…

Day 34:  

General status update 

Hair: Am only allowed to wash it once a week during chemo/cold cap, and today was The Day. This is terrifying, as every week I think it’s going to The Week when my hair starts coming out in clumps. It didn’t. It looks beyond terrible, as I’m not allowed to use a hair dryer, but no more hair than normal came out. Thank you, cold cap, for as long as it lasts – ALL my chemo buddies who haven’t used it have already lost all their hair. 

Nausea demon: Was so quiet this morning that I felt almost normal, which was – odd. So odd, in fact, that I began to suspect that he had taken himself off on a weekend mini-break (perhaps to Bilbao: he keeps saying he wants to go and see the Guggenheim - he is a HUGE fan of  Frank Gehry - before he returns to the infernal regions) with his mysterious new amour. However he began to make his presence felt towards lunch-time, so it seems not.  

We’ve generally designated Saturday as everyone’s day off, and the Chemo Muse and Chemo Brian are playing scrabble together. This is painful to witness: the Chemo Muse is, obviously, a Ninja Scrabble Player and as for Chemo Brian, many of whose brain cells were obliterated with high class pharmaceuticals of a quite astonishing variety during his glory days in the late 60s / 70s – well, it might be better if they switched to Ludo. Current score 423 – 62, and I think she’s about to finish using all 7 letters across 2 triple word scores, and incorporating the ‘Q’ he has already put down. Brutal. 

Fatigue/weakness: Not as bad as it was earlier in the week, but in general FEC 2 has been much, much worse in this respect than FEC 1.

Sleep, lack of: n/a

Anxiety level (1-10): It’s still 10 days until FEC3, but its shadow is already looming surprisingly large. You think FEC2 was bad? FEC3 is the really, really bad one. Everyone tells me so. 

State of mind: Trying to be mindful, live in the moment, not ruin now by thinking forward about what is going to happen then. Success limited.

 

 

 

I woke up this morning feeling almost normal, which felt distinctly odd after 10 days of fairly consistent extreme awfulness since the administration of FEC2 a week ago on Wednesday. Today there has been a blissful sense of freedom from the sharper jabs inflicted by the pitchforks of the Chemo Demons – just low-level nausea, and feeling very tired, which is now a constant. But it’s perfectly bearable, and not unlike a mild hangover: and that’s as good as it gets on chemo - for me, at least.

There is 10 days ahead, now, all being well – i.e. as long I as remain free from any kind of infection – during which I can go out a bit, and do rather  more, and generally regroup before FEC3, which will happen a week on Wednesday, January 23^rd. I know already that FEC3 is usually very bad indeed, and considerably more unpleasant than FEC2, which was quite egregiously unpleasant itself – my oncologist told me so, and so have other women who have already experienced it. So I’m going to try to pack as much of a good time into the next 10 days as I can, do things I can remember in 2 weeks’ time when the Nausea Demon is riding his surf-board triumphantly on the vast waves of sickness cresting and breaking over me, again, and again, while the Chemo Nano-Rats swarm furiously in my stomach, biting and scratching viciously as they try to eat their way out from the inside, and I lie on the floor curled up in a foetal position, weeping and muttering that I just want to die, PLEASE let me die, that death really would be preferable to this.

I did that at one point during this chemo cycle, and the one before that, and the odds are I’ll be doing exactly the same thing next time. Being able to predict exactly how bad you are going to be feeling two weeks from now is really a very strange phenomenon.

So, tomorrow, all being well, R and I are going to pop along to the V&A, which is not far away, and see their much-praised ‘Hollywood Costume’ exhibition; I do love a nice frock.

This will be my first proper outing, far too many hospital visits apart, since going to see The Hobbit, during the ‘good week’ of FEC1 just after Christmas – I am beyond excited. Next weekend, just before FEC3, we have even grander plans – the icy weather, the trains and my bodily state permitting - a quick trip up to north Yorkshire to see BigSisFo, the MC and Hank the demented Hungarian Visla (and his humongous balls, obvs). But that seems a very long way away and rather ambitious, in my new, rather limited world:  for now, a trip down the Yellow Brick Road to South Kensington tomorrow glitters in front of me like the most precious and desirable of baubles. 

They’ve got the Ruby Slippers, you know – the ACTUAL Ruby Slippers from the Wizard of Oz.

 

 

 

p.s To all those who posted comments on the ' Walk On By' post on Wednesday, please have a look at my response in the comments column.