Showing posts with label chemo-side effects. Show all posts
Showing posts with label chemo-side effects. Show all posts

Sunday, April 7, 2013

No surrender


Day 119

General status update
FEC cycle 6, day 4

Fatigue/weakness: too weak now to do anything, much. It’s BAD. It will pass. This is the LAST TIME.

Anxiety level/insane euphoria (+/- 1-10,000): for the first time the fatigue is stronger than the Dexys. Insane euphoria sadly absent.

Nausea demon: our early morning meds and breakfast assignations are taking on something of an elegaic quality – both he and I know that we only have about another week together.

Chemo Muse: she’s waiting impatiently for the fatigue to stop trumping the Dexys, and amusing herself with the Despair Demon in the interim. Poor besotted fool.

Chemo Brian: on reflection, I think I’d rather like to keep him, and given that the after-effects of chemo may go on for the next 3-6 months, I don’t see why I shouldn’t.

State of mind: will be a lot better after this week is over – I’m not finished with FEC until FEC has finished with me.

Hair: Well, I’ve had the final dose of chemo and it still hasn’t fallen out – who would have thought it? It’s thin, it’s tatty, but it’s still pretty much all there, whichs has been a matter of wonder and amazement to all, and a huge stroke of good fortune for me. I can’t gloat about it, though, knowing the huge grief that losing their hair has caused to my Sisters in Chemo; it really is like being kicked when you’re already on the floor. 
  

It’s so close to the end now, but it’s still so hard – FEC doesn’t want to let me go just yet.

I’m so weak that the slightest physical exertion, and I mean the slightest, exhausts me, and I have to sit down and rest. My legs feel like jelly, and the bottom half of my left arm hurts quite badly inside from the toxicity of the chemotherapy drugs that were pumped into me on Thursday. The nausea and stomach pains are perhaps at 40% of the level of the earlier cycles, now the meds have been sorted, and with extra steroids to boot, but it's still extremely unpleasant.

It’s day 4 and today and the next few days are the worst, so I just have to grit my teeth and bear it, keep reminding myself that is the last time, THE LAST TIME, that 3 weeks from now I will not be entering another chemo cycle, I will simply be getting better and stronger.

Soon I will be swimming again, gliding through the water, the cool silky water, free from the PICC line, free from the needles, free from the poison, free from the chemical prison.

I just have to get through this week of feeling terrible, and the following week of having no immune system, and then I can get back in the pool. My greatest fear, right now, is of anything happening to stop that.

I am desperate to get back in that pool, and I will.

There will be no retreat, no surrender.






Friday, March 22, 2013

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 22nd 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.




Monday, February 11, 2013

Les Fleurs du Mal

Day 64  

General status update 

Nausea demon, Chemo Muse, Chemo Brian: they just don’t know what to do with themselves – see below.

Fatigue/weakness: considerable 

Sleep, lack of: n/a 

Anxiety level (1-10): shape-shifting from dread of chemo to fear of neutropenia 

State of mind: resigned  

‘



'Only when we drink poison are we well'
              Charles Baudelaire, Les Fleurs du Mal

I think this afternoon is probably the first time I have ever directly channelled the spirit of a rabid Arctic Wolf but, when it occurs, the sensation is really quite unmistakable. The trigger is a charming young doctor and PhD researcher, who greets me at the oncology clinic today with the following words: ‘You’re looking well.’ 

It is a truth universally acknowledged by chemo patients – at least all the ones I hang out with on the BCC UK forums – that the single most annoying comment of all the many thrown at them by family, friends, enemies, complete strangers and medics is this: ‘You’re looking well’. I reveal this in the spirit of a public service announcement so that you, Gentle Reader, will never end up on the receiving end of a chemo patient’s steroid-fuelled homicidal rage in response to making what you thought was an innocuous and helpful comment. 

Whatever we might look like, WE FEEL LIKE HELL, OK? 

The steroids might make what remains of our hair glossy, and our skin smooth and glowing, the poison might perhaps be giving us some kind of strange toxic bloom, but all of this is entirely illusory: we are being systematically poisoned, with hideous side effects; we may or may not be going to die sooner rather than later; we no longer have any control over our lives, and are trapped in a chemical prison at the mercy of the medical profession; we are frequently on the verge of losing it entirely, and then some fool smiles at us cheerfully and says ‘ You’re looking well’.

Dr S is conducting a research study with chemo patients, to see if any connection can be found between the composition of a patient’s blood, and the level of severity of chemo side effects they suffer. It is a useful study which may help cancer patients in future, I am happy to be participating in it, and Dr S is highly likeable, empathetic and kind, but today she is completely nonplussed, because I’ve had a hell of a week and, most discourteously, I respond to the poor girl’s polite queries by giving her the unvarnished truth. 

I haven’t seen Dr S since I signed up for the study, just before my chemo started. Now she wants a little chat, and to make arrangements for more blood tests after FEC 4. 

‘So, how’s it been going?’ she asks, brightly. 

‘It’s HORRIBLE.’ I am in no mood to mince words. 

‘It’s unspeakably horrible.’ Then, just in case she hasn’t got the message: ‘It’s just VILE.’

‘Oh dear’ she says ‘I’m sorry to hear it hasn’t been going well for you, Caroline.’ 

‘WELL?’ I snarl, ‘It’s CHEMO. I’m being systematically poisoned – in what way can this be expected to go WELL?’ 

By this time Dr S is looking slightly panic-stricken, as well she might when faced with a rabid Artic wolf, thinly disguised as a chemo patient, eyeing up her throat in the manner of one who might be planning to tear it out in the very near future. 

‘But you’ve still got your hair', she squeaks, desperate to remedy the situation 'and it looks lovely.’

‘Yes’ I say slowly, my fury suddenly dissipating as swiftly as it arrived, ‘at least I still have my hair – well, most of it, anyway.’

Later, I have my pre-chemo oncology appointment with a new registrar, Dr V, who has just rotated in; holding my file, he asks me how many cycles of FEC I have had so far, and if I have been suffering from any side effects.

Oh, bloody hell, I think, here we go again – don’t doctors EVER leave any even vaguely representative notes in the files? What do they write in there – their shopping lists? 

I recite my nausea history, I recite all the drugs I need pre-chemo and after chemo, I tell him about the stomach toxicity and that I also need Omeprazole to deal with that, and soon Dr V is au fait with the entire panoply of pharmaceuticals that my body requires to deal with the side effects of being poisoned. I wonder, in passing, if I could leave this Homeric oral history recitation in the form of an MP3 file, in order to avoid having to repeat it all at every meeting. I also tell him about my recent A&E visit, and the viral infection from which I am now recovering. 

Fine – now he just has to do the prescriptions, and then I can get out of here.

Then he looks at his computer screen and says ‘Hmmm.’

What do you mean, hmmmm, I don’t like hmmm, WHAT’S THE MATTER?

He turns back to look at me, and sighs. ‘I’m afraid your neutrophils are right down.’ 

I had the usual blood test before I came in here, and the results are already on the system: neutrophils are a specific kind of white blood cell that help prevent and fight infections, and the normal level of neutrophils in the blood is between 2.5 – 6.0.
or, to be more accurate, normal ANC (Absolute Neutrophil Count) values range from 2,500 to 6,000 neutrophils per cubic millimetre of blood.In order to be strong enough for chemo, your white blood cells must be at a certain level – 1.5. Mine were at 1.5 when I was in A&E last week, but now they have dropped to 1.1.  That makes me mildly neutropenic, and unfit for chemo. A neutrophil level of 0.5 or less would put me in serious danger, and the chemo will destroy more neutrophils, so I can’t have any more chemo until I have created a lot more neutrophils for the chemo to kill.

This is the simple but deadly arithmetic of chemotherapy, and there’s no arguing with it. 

All my aggression gone, I feel like a sad failure. I haven’t made the grade; it reminds me of when I failed my cycling proficiency test. ‘You could come in and have another blood test on Wednesday morning to see if it’s improved’ says Dr V ‘but I’d be happier if you just postponed the chemo until next week. Your body needs more time to recover from the last dose of chemo, and from the viral infection.' 

‘The only thing worse than having chemo is not having chemo’ I say, sadly, but I know he is right. I was startled, earlier, by how weak my legs were when I was walking down the Fulham Palace Road towards the hospital.

My strong, swimmer’s legs. 

‘It won’t make any difference to the overall outcome’, says Dr V. ‘People often have to postpone their chemo until they get a bit stronger.’ 

‘It’s fine’ I say, ‘Really. I could do with the rest. Is there anything I can do that might help the neutrophils recover? Eat spinach?’ 

Dr V laughs ‘I’m afraid the Popeye model isn’t applicable here. No, there’s nothing you can do – you should be fine by next week if you just go home, and rest.’.

I thank him, we shake hands, and then I trudge back up the Fulham Palace Road to go and do exactly that.

Sunday, January 27, 2013

Practicing the Ars Amatoria via Sun Tzu’s ‘Art of War’


Day 49   

General status update: 

Hair: staying in the Smurf hat/snood until I feel able to deal with it, which is not going to be today. It’s Day 5. I feel like HELL; I am IN Hell. Hell is all around.

Nausea demon: Vicious, vicious, vicious. He’s ruining the Australian Open final. That’s the second Grand Slam final in a row ruined by this f***ing cancer. After waiting all these years for Andy Murray to get to the top, watching all those matches as he fought his way up through the ranks, I am forced to witness his greatest moments in a state of either mental or physical torment. I never say ‘why me’, but couldn’t you just have left me alone for the tennis? Or arrived earlier, for that matter – there were a lot of agonising Tim Henman Grand Slam matches from which I would have been only too happy to be distracted. 

Chemo Muse: Working her a*** off to get me through this, keeping me going, driving me on.

Chemo Brian: Keeping out of the way on the sofa with

Chemo Rat Brian: who has settled in so quickly it’s as if he’s always been here.

Fatigue/weakness: entirely incidental in the current situation.

Joints: aching 
 
Mouth: sores appearing on gums
 
Taste/smell: food tastes like mud, coffee tastes of iron filings, wine smells and tastes like vinegar; everything cooking smells atrocious. And yet, I MUST EAT.

Limbs: that bizarre sensation of being inflated again, as if I am swelling up into the Stay Puft Marshmallow Man in Ghostbusters – remember him?

Sleep, lack of: pharmaceutical sedation beginning to look very attractive, but I don’t want to wake up Chemo Brian and have my brain go all blurry.

Anxiety level (1-10): No anxiety, because what I most fear is HERE. Plenty of room for incidental
Rampant Paranoia, though, about all manner of things. 

State of mind: This too shall pass, this too shall pass, this too shall PASS. 

 

the Stay Puft Marshmallow Man

 

It’s Day 5, the much-dreaded Day 5 of the third cycle of FEC.
 
 Physically, I am feeling beyond wretched: tormented, despite all the anti-emetic drugs, by constant rolling waves of nausea, with aching joints, and the entirely illusory but still unpleasant sensation of the skin on my arms and legs puffing up and swelling. Sore patches have appeared on my gums, it hurts to eat, and everything tastes like mud, but I have to keep eating small amounts anyway, to help combat the nausea. 

There is nothing I can do to make it go away, and it's becoming more and more unbearable.

‘This is why I am here’ says the Chemo Muse, speaking more gently than usual to the shivering, retching, aching thing that I have now become.

‘I know you hate me sometimes, but I am here to help you.  You are feeling so sick, and so tired, and all you want to do is to lie down and close your eyes, but that won't work for very long. To escape from what is happening to you now, from this unbearable reality, you need to release your mind from your body, and let it float away. You have to recreate yourself in a different, happier place.’

She takes my hand. 

‘You’re going through absolute misery right now, physical torment, but you’ve also experienced some extraordinary happiness over the last two years, haven’t you?’

‘Yes, yes I have…’

‘Let’s go back there, then. Let’s go back to the time when you started being happy again, after being lost and alone for so long…’

It’s the autumn of 2010, and I’m in my camel barn in Ayvalik, on the north Aegean coast of Turkey, the old camel barn I have had restored and converted into a library to house the 5-6,000 books I have spent my life collecting, but never previously had the space to shelve. Creating my own library has been the fulfilment of a lifetime’s ambition; I moved here 2 years previously, after spending a few years teaching in a university in Ankara, taking time out to supervise the restoration of the Ottoman Greek house I have bought by the sea, and the camel barn which is attached to it.

I can’t afford not to work forever, but I have enough to keep me going for a few years, if I live carefully, and I’m giving some English classes at a local language school to bring in a few quid. Ayvalik, on the north Aegean coast of Turkey, is an old Ottoman Greek market town, a remnant from the time when the western coast of Asia Minor was Greek, and is a haunting and beautiful place, a strange mix of deserted ruins and beautifully restored houses.

This odd, half-ruined olive-growing and fishing town is way off the radar of most European tourists, but tends to draw to it foreigners working in Turkey who like historic towns and old houses, and Turkish writers and artists from Istanbul or Ankara who feel much the same, unlike most Turks, who tend to prefer new, shiny houses, what with the whole country being so full of thousands of years’ worth of crumbling ruins from the many different civilisations that that have swung through Asia Minor over the last few millennia. I’m alone in life, as I have been for a long time now, but there are plenty of interesting people to hang out with in Ayvalik, and I have a lot to do.

The restoration of the house and barn has been the usual nightmare, but it’s finished now, and I’ve had all the bookcases for the library made with reclaimed oak from an old demolished grain warehouse in Bursa, and with a little help from my friends have unpacked the 70 or so boxes of books and shelved them, very roughly arranged, by broad subject area. The contents of these bookcases follow the progress of my intellectual and working life through a variety of undergraduate and postgraduate degrees and extremely ill-thought out career choices - Latin and Greek literature, philosophy – ancient and modern, political theory, corporate finance, financial analysis, molecular genetics, human physiology and evolution, evolutionary theory, the philosophy of biology, demography, evolutionary psychology - and the channelling of my leisure hours into a  truly world class collection of crime fiction, covering all eras and sub-genres and geographical areas, with a particular fondness for the literary skills of Reginald Hill and Donna Leon, and for American crime fiction set in the freezing winters of the snowy Midwestern states of Minnesota and Michigan.

So I’m just about to get on with the proper cataloguing and arrangement of the books, I’ve been writing a blog about Ayvalik and Ottoman Greek history and the camel barn, and am doing some research into Byzantine and Hellenistic Greek history (the Greeks were in in charge of this part of Asia Minor for some 2,000 years, before the Turks rode in from the steppes and took over), and I’m busy and happy and occupied, and then R suddenly waltzes into my life from out of nowhere, and puts everything into a spin. 

As previously related, it is an entirely random meeting on Twitter that first brings R and me together and starts us talking, and once we start talking, we just never stop. We have a great deal in common: R is a philosopher, a Professor of Bioethics, and his intellectual hinterland includes mathematics, philosophy, the history of science, and all areas of philosophy that combine the problems of ethics and human medicine and biology; his leisure reading, meanwhile, is rather more challenging than mine in both range and content, including history, poetry, and literature of many kinds and from many languages, not to mention his own genre speciality, science fiction.

R introduces me to the poetry of Cavafy, the extraordinary meditations on the philosophy of cricket and colonialism in CLR James’s ‘Beyond a Boundary’, and Burton’s ‘The Anatomy of Melancholy’; as I am currently immersed in books on libraries, and the history of the Greeks in Asia Minor, I introduce him to Alberto Manguel, to Bruce Clark’s ‘Twice a Stranger’, the definitive account of the catastrophic Turkish-Greek population exchange in 1922, and to Giles Milton’s harrowing ‘Paradise Lost: the Destruction of Smyrna, 1922’. 

We spend a lot of time, that autumn, exploring each other’s minds, and happily exchanging ideas; eventually, we start to exchange emotions, too.
 
And for a variety of reasons I’m resisting emotional entanglement with R, who is 2,000 miles away in London, but all’s fair in love and war, and laying siege is common practice in both; R, as ever drawing on an eclectic range of sources, takes inspiration from the Chinese military strategist Sun Tzu in his celebrated 6th century BC treatise ‘The Art of War’, when he advises ‘Hold out baits to entice the enemy’. 

Accordingly, he decides to send me, in my far-off corner of the north Aegean, a present.

What bait should he hold out to entice the enemy?

He ponders long and hard, and cunningly thinks of the one thing he can send me that will utterly beguile me, and engage me, draw me into yet more conversation and render all further resistance entirely futile:

R gives me a year's Overseas Subscription to the London Review of Books.

Tuesday, January 22, 2013

Quoth the Raven ‘After FEC 3, then 3 more…’

Day 44
 
General status update 

Hair: Afflicted by usual pre-chemo paranoia – will this be the dose when the chemo finally hits the follicles? On plus side, Hair very much looking forward to its forthcoming snood mini-break. 

Nausea demon: back from Bilbao and boring for England re the genius of Frank Gehry. Have suggested he apply for Mastermind with this as his special subject. 

Chemo Muse: She can’t wait to gobble up the Dexamethasone – take those steroids, hear her ROAR! - and set me to work.

Chemo Brian: Depressed – Dexamethasone is to him as Kryptonite is to Superman. He likes drugs whose names begin with Benzo-  Told him they may well be on the agenda later in the week. .

Fatigue/weakness: anxiety trumps fatigue every time.

Sleep, lack of: That will start again tomorrow, after the steroids. 

Anxiety level (1-10): Breathing deeply, trying to stay calm, even though Stan did tell me right at the beginning that FEC 3 will be the worst one. And FEC 2 was Beyond Horrible. 

State of mind: Get thee behind me, Goa; the flights probably aren’t even running, what with all the snow. A trip to the chemo ward tomorrow, or a 24 hour wait in Heathrow airport? There are some things worse than chemo, and Heathrow when all the flights have been cancelled is one of them.

 
In Gurkha Towers, 2 days after the Eve of St Agnes, and on the Eve of FEC 3, the Anxiety Demon manifests itself to a troubled Fo, in the form of Edgar Allen Poe’s Raven…
 
 
 
Once upon a midnight dreary, while I pondered weak and weary,
Over many a quaint and curious volume of the cursed FEC chemo lore,
While I nodded, nearly napping, suddenly there came a tapping,
As of some one gently rapping, rapping at my chamber door.
`'Tis some visitor,' I muttered, `tapping at my chamber door -
Only this, and nothing more.'

Back into the chamber turning, all my soul within me burning,
Soon again I heard a tapping somewhat louder than before.
`Surely,' said I, `surely that is something at my window lattice;
Let me see then, what thereat is, and this mystery explore -
Let my heart be still a moment and this mystery explore; -
'Tis the wind and nothing more!'

Open here I flung the shutter, when, with many a flirt and flutter,
In there stepped a stately raven of the saintly days of yore.
Not the least obeisance made he; not a minute stopped or stayed he;
But, with mien of lord or lady, perched above my chamber door -
Perched upon a bust of Pallas just above my chamber door -
Perched, and sat, and nothing more.

Prophet!' said I, `thing of evil! - prophet still, if bird or devil! -
Whether tempter sent, or whether tempest tossed thee here ashore,
Desolate yet all undaunted, on this desert land enchanted -
On this home by horror haunted - tell me truly, I implore -
Is it- is FEC 3 the worst one? - tell me - tell me, I implore!'
Quoth the raven, `After FEC 3, then 3 more.'

Be that word our sign of parting, bird or fiend!' I shrieked upstarting -
`Get thee back into the tempest and the Night's Plutonian shore!
Leave no black plume as a token of that lie thy soul hath spoken!
Leave my loneliness unbroken! - quit the bust above my door!
Take thy beak from out my heart, and take thy form from off my door!'
Quoth the raven, ` After FEC 3, then 3 more.'

And the raven, never flitting, still is sitting, still is sitting
On the pallid bust of Pallas just above my chamber door;
And his eyes have all the seeming of a demon's that is dreaming,
And the lamp-light o'er him streaming throws his shadow on the floor;
And my soul from out that shadow that lies floating on the floor
Shall be lifted – ‘After FEC 3, then 3 more.'