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…

Rollercoaster

Day 96 

General status update

Despair Demon: the Dexy-fuelled Chemo Muse ambushed him early this morning, tied him up, and imprisoned him in the airing cupboard. At least it’s nice and warm in there.

Nausea demon: On the floor at the moment, bludgeoned by the IV Fosapprepitant, the steroids (which do combat the nausea, as well as making me high, remember), and the Ondansetron, Domperidone and Cyclizine anti-emetic drugs I have taken orally this morning. He’s just biding his time though, until Sunday, when the steroids wear off.

Chemo Muse: When we get steroided up on the Dexys after each dose of chemo, she expands like a genie coming out a bottle, and fills the room in a shimmering, swirling cloud of mist threaded with iridescent rainbow lights gleaming from the long, writhing snakes of her hair. (what can I say; I’m on drugs, alright? There have to be SOME good bits in the chemo nightmare). She is very, very powerful this morning, as a result of which I wrote 500 words before 8am.

Chemo Brian: gazing in awe at the newly-psychedelic Chemo Muse, and muttering about how she reminds him of a particularly wild mescaline trip he took with Aldous Huxley in the Sonoma Desert back in the day. Jesus, HOW OLD is Chemo Brian? I thought he was just an old hippy – he was at Woodstock, after all – but if he was hanging with Aldous he must be an old proto-hippy. Ah, good point – Chemo Demons aren’t mortal, are they? Chemo Brian is the Stoner for All Ages.

PICC line: in disgrace after it refused to function in the Chemo Ward yesterday, even for Matron Becky, after behaving perfectly 3 times over the last 10 days and gushing blood like a geyser in Yellowstone Park. We both looked at it, completely aghast. thinking ‘I JUST DO NOT BELIEVE THIS’. It’s claiming to be suffering from intolerable levels of stress and performance anxiety because of the increasingly high expectations heaped upon it. ‘Yeah, but you can hardly say that this HASN’T HAPPENED BEFORE, CAN YOU’ muttered Becky, darkly, as she prepared yet another injection of saline solution to flush it with. Actually, given that it had two assertive and increasingly pissed off women staring at it with increasing fury every time it failed to perform yesterday, maybe it’s not surprising it couldn’t get it up…

State of mind: only one more FEC to go, only one more FEC to go, only one more FEC to go!!!! Sorry, did you say something?

Hair: Dozing gently, as per post-Cold cap protocol, in snood and Smurf hat. It loves this bit of the cycle.

I wrote all of the above very early this morning in a mad burst of steroid-fuelled energy and then paused, intending to write the actual blog post this afternoon. I had to go off to the hospital first for another of those very expensive Pegfilgrastim injections to boost the production of neutrophils in my bone marrow, to strengthen my immune system and keep me infection-free during this chemo cycle. Because I’ve had two infections during the first four chemo cycles, the oncologist is very concerned to prevent any more from taking hold.

At the hospital two very good things happened – it was probably my best hospital visit ever, but unfortunately I can’t write about it now because my energy has crashed completely.

I’ve become so weak all of a sudden that I just have to go and lie down.

This is the Way of Chemo: sometimes the fatigue hits you so hard that your body tells you ‘Lie down – NOW’ and you simply cannot do anything else.

Tomorrow I’ll tell you about the good things that happened – at least those regular readers who have suffered with me every inch of the way through the last 14 weeks will know, for once, that tomorrow there is a cheerful post to look forward to.

Unless something bad happens during the night, that is, a possibility which can’t be entirely ruled out, given the run of luck I’ve had so far.

See you tomorrow, my friends.

Don't bring me down..

Day 81

General status update

Hair: Dishevelled, ratty, shedding, but still largely attached. It’s a miracle. I truly thought it was falling out after FEC3, but it was a false alarm. No one believes I’m having chemo, obvs. Even some of the doctors look at me oddly.

Nausea demon: Still doing his best, but starting to lose his grip for this cycle.

Chemo Muse: She says ‘ENOUGH WHINING! You’re starting to feel a bit better, so just shut up and get on with it! And watch my lips: NO MORE LORAZEPAM.’

Despair Demon: the Chemo Muse evicted him this morning, after giving him enough money for a one way ticket to Milton Keynes – he’s needed there.

Chemo Brian: We’ve had 3 days on the sofa together in a Lorazepam daze, but now it’s time to rejoin the human race.

.

Fatigue/weakness: gathering 

Anxiety level (1-10): Anxiety has been put on hold for the time being, due to the complete unbearability of thinking for even one nano-second about the next chemo cycle. WE ARE NOT GOING THERE.

State of mind: Considerably more alert after stopping the Lorazepam, and slightly less crazed and angry, now that the worst days of the cycle are over. Onwards and upwards.

The Chemo Muse is back in charge again now, after the last few days of weeping and wailing and gnashing of teeth as I went through the truly bad days of the chemo cycle. She wants effort, work, progress, and a return to the - very - slowly unfolding narrative of the events that led, inexorably, to My Chemo Hell and the shipwreck of a person who now presents herself to you in this blog on a daily basis. Let us return, then, to the morning of October 4^th, 2012 – the day of my operation...

As instructed, we are at the hospital at 7.30 am, reporting to the confusingly named Riverside Ward (the Charing Cross Hospital is some distance from the River Thames). This is the ward where day operations take place, and the waiting room is packed; soon there are a number of people standing. R sportingly gives up his seat to someone who looks in more need of it, and sits on the floor next to me. We are both terrified, and pretending not to be, and somewhat disconcerted to find that relatives are not admitted to the ward at all; R will not be able to come to my bedside after the operation, but will be telephoned to come and pick me up when I have recovered enough to leave the hospital. We agree that he should go home, and wait to be telephoned, and when my name is called I have to go in alone, leaving him behind.

Inside I am shown to a curtained bay containing a hospital trolley/bed and given a hospital gown, paper knickers and surgical stockings. The nurse tells me I am fifth on the operating list, so there will probably be some considerable time to wait. Reluctantly, I change into the hospital attire, and consider what to do next. The hospital bed/trolley is very narrow, the curtained cubicle is tiny, and there is no chair to sit on, but I am very strongly disinclined towards getting into the bed and awaiting my fate. I have read some of the medical anthropology literature on the role of patient, and know that as soon as I get into that bed I will be weakened, enfeebled, institutionalised, passive, putty in the hands of the medical establishment.

Well, sod that for a game of soldiers. No, there must be another way…

Some time later, when the duty anaesthetist pops his head round the curtain to introduce himself and ask the regulation pre-general anaesthetic questions, his brow furrows and he looks puzzled, as well he might, because there is no patient in the bed.

Then he looks up and sees me some distance above him, perched on the very high window-sill, a position I have only been able to achieve by climbing up the rung-like metal sides of the hospital bed and using it as a base from which to launch me upwards. The window ledge is quite wide, and pleasantly cool, as a tiny bit of air is managing to make its way in round the edges of the sealed window unit.

(‘Oh my God, you must have looked like a demented owl’ said my sister a few days later, horror-stricken by my accounts of repeated bad behaviour and non-compliance in hospital environments since being diagnosed with cancer. ‘Why can’t you just be a bloody patient like everyone else and let them help you get better, you FREAK?’)

‘Ah, hello’ says the anaesthetist ‘I’m Dr X’ (I’m afraid I don’t remember his name, which is a shame, as he turned out to be so very, very kind).

‘Don’t mind me’ I say, morosely, ‘I just don’t want to be a patient yet, and when I get in bed, I’m a patient’.

Dr X could have pointed out that since I am in hospital wearing a hospital gown, surgical stockings and plastic identity bands on my wrists, and am going to undergo surgery within the next couple of hours, it is a bit late to start talking about not wanting to be a patient. Instead, with a great deal of forbearance, and considerable kindness, he humours me.

‘No problem’ he says, ‘I know just how you feel. I had an operation myself recently. Why don’t I just come and sit up there with you for a few minutes, while we do this?’

He repeats my procedure of climbing up the metal side parts of the bed and launching himself thence onto the window sill, and we sit there for a few moments in companionable silence. After a while he begins to ask the questions relevant to the imminent administration of general anaesthetic, all of which have been asked before more than once, but which presumably must be triply and quadruply checked to make absolutely sure that there is no error, that no point of danger is overlooked.

In the middle of all this, the surrealness of my position kicks in again. What am I doing here, dressed like this, answering questions from a doctor in surgical scrubs? I don’t want to be here, I want to be…

‘In Goa. I want to go to Goa.’

‘I’m sorry…?’

I explain the whole ‘escaping to Goa’ plan to Dr. X, telling him how it can’t possibly be right that I have breast cancer because have I not swum 23 miles this summer in the swimming pool of THIS VERY HOSPITAL, and do I not have terrific upper body strength with excellent triceps, which I would display to him were it not for this pesky hospital gown? And he nods and listens, and holds my hand as I start to cry, and for some time afterwards, and tells me how I can go to Goa later on, when I’m better. He gently suggests that a tranquiliser might be a good idea to help with my anxiety, and after he leaves I come down from the window sill, get into the bed, and go to sleep for a while.

(to be continued)

Two peas in a pod

Day 62

Intermezzo: another romantic interlude

General status update: 

Hair: it’s been forgotten, really, in this week’s general mêlée. Still mostly attached. 

All the Chemo Demons are united as never before, BEGGING me to stop making that awful noise, and to evict the Coughing Demon from the sofa, of which he took possession much in the manner of Hitler invading Poland  (exiling a bewildered Chemo Brian to R’s battered leather armchair ) and where he now lounges menacingly, occasionally picking up poor little Chemo Rat Brian and swinging him around by the tail. The Nausea Demon keeps muttering ‘NOTHING I’ve ever done to you is as anywhere near as bad as this’ and ‘Seriously, that is One Mean Dude’, and the Chemo Muse has gone all motherly, bringing me soothing mugs of honey and lemon. 

Fatigue/weakness: very tired and over-exerted bronchial region – legs not being used much, just at the minute. 

Sleep, lack of: Lorazepam indicated tonight, so that the coughing won’t keep me awake. 

Anxiety level (1-10): FEC 4 next week? Yeah, whatever – it’ll make a change from coughing, fever, IV antibiotics and grief. 

State of mind: it’d be funny if I died of a coughing-induced asthma attack instead of cancer, wouldn’t it?

It has been a week of intense wretchedness, both physical and mental; the Chemo Muse, new highlights gleaming as she tosses her snaky locks to give us all the full effect, suggests that today it might be better to write a blog post that is not concerned with cancer, chemo or death, which is perfectly fine by me. 

‘Right’ she says briskly, ‘let’s get back to this - quite frankly, bizarre - epistolary cyber-romance of yours, back in 2010. We all know you and R first ‘met’ during a discussion on procrastination on Twitter, I see from your Gmail in-box that the two of you exchanged many hundreds of emails in the autumn of 2010, and you’ve described how you spent your lunch-times together, 2000 miles apart, engaged in literary discussions arising from the London Review of Books – by text.  

She rolls her eyes in a way that indicates the courting rituals engaged in by the love-child of Medusa and Chemosh, God of the Moabites, might well be rather more abbreviated, direct and, quite possibly, painful. 

‘So’ she continues ‘at what point did it finally occur to you and R that it might perhaps be a good idea to cease communicating only by written means, and actually start speaking to one another – you know, like normal people do? 

I laugh, because the first time I heard R’s voice, it wasn’t directly: he sent me a link to the podcast of the inaugural lecture he gave on being appointed to his Professorship of Bioethics, on the subject of Ethics and Politics in 21st Century Healthcare. In it he discussed the influence of political philosophy on health policies, asking whether ideology reflects what is really happening in GPs’ surgeries and hospital wards, and then examined current political thinking with its emphasis on patient “choice and empowerment”, encouraging people to take greater responsibility for their own health and welfare. 

Or so I’m told.  

I have to confess that I’ve just copied and pasted that summary from the web, because although I listened to the lecture several times, none of the content sank in; each time I became completely distracted by hearing R’s voice, which had said so much to me over the previous few months, but which only now could I finally hear.  

 Shortly afterwards I saw R for the first time, in a YouTube video in which he was being interviewed by what appeared to be a Hobbit, about matters bioethical; truly, ours was a strange romance… 

We moved on to speaking on the telephone, we exchanged photos, we talked on Skype, although without the visuals, as neither of us had webcams, and eventually we started to discuss meeting in person, although I was still convinced that this would be the point at which our deepening relationship would fall apart. I’d read too many stories of virtual relationships collapsing on meeting in person, with the painful recognition that online chemistry had not translated into real life. R, on the other hand, was blithely unconcerned, convinced that our meeting was a mere formality, and happily talking about how we could build a future together.

I thought he was bonkers.

Still, I recognised that now we had become so close, virtually, we had to take the next step, even though it would probably turn out to be a complete disaster. I agreed to fly back to London and meet him, in the last week of March. I could stay at my parents' flat in Richmond, in south-west London, since they spend most of the year in Mallorca.

I booked the plane ticket on Easy Jet and, with only a few weeks to go before meeting for the first time the man who had become such an important part of my life, started to feel very, very anxious. My closest friend in Ayvalik, D, an intrepid Irishwoman, listened to my worries patiently over many lokanta lunches, and took the ‘nothing ventured, nothing gained’ approach: if it didn’t work out, if there was no chemistry, then it was no big deal - I could just come back to my life in Ayvalik and get on with cataloguing the books in the Camel Barn Library, no harm done. 

It’s all very well for her to say that, I thought, darkly: she isn’t the one who’s going to have face the excruciating embarrassment of flying 2,000 miles to meet someone, and for that meeting to be such a complete fiasco that it will cause sleepless nights of remembered humiliation for years to come. 

However many times I enumerated to D my list of reasons why this relationship could never work in the long term, anyway, given the various obstacles in our way, she would just shrug and say ’Well, you’ll never know unless you try, will you?’ Eventually, I showed her the video of R on YouTube; she immediately commented on his good looks and then, after listening to him talking for a couple of minutes, started to laugh. 

‘What?’ I said, puzzled, seeing nothing inherently comic in R explaining the basic principles of bioethics. ‘What are you laughing at?’ 

‘Listening to him… and listening to you – you’re both just so… like each other. You really don’t have to worry about how it’s going to work out, Caroline – you and R were made for each other. You’re like two peas in a pod.’

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…

Whatever Gets You Thru the Night…

 Day 12 - The Chemo Muse Moves In

 

General status update

Hair: still there, but it usually starts to fall out between days 9-14 of the first chemo cycle, and I am now on day 11, so both Hair and I increasingly anxious. No sign yet, however, of the painful scalp-tingling which apparently signals imminent hair loss.

 

Nausea demon: fighting back a bit today, as I got overconfident and careless and went for too long between doses of the meds – he was in like Flynn.

Chemo Muse: has unpacked, done the ironing, written a Petrarchan sonnet, and is about to go for a run.

Anxiety level (1-10): took Lorazepam last night to ensure some sleep; this makes you the opposite of anxious. Whatever that is. Unanxious, I expect.

State of mind: liquid jelly, pomegranate flavour. It’s the drugs, dude.

 

Yesterday I got up at 5.30 a.m., my mind buzzing with ideas, and worked at my computer through the whole day - with only short breaks for refreshment and the ingestion of various pharmaceuticals – until about 9 p.m., writing, editing and publishing yesterday’s lengthy, scent of decomposing rat-infused blog post, some 2,200 words in length.

Given that I have cancer, and am in the middle of my first chemotherapy cycle with its attendant unpleasantnesses, this Stakhanovite work rate is taking a lot of people by surprise, not least myself, and gives rise to the question of where the hell all this insane (and entirely uncharacteristic) mental energy is coming from; as Big Sis Fo put it with her customary directness when she called me earlier today for a chat: ‘Caroline, WHAT THE HOLY F*** ARE YOU ON?’

By the way, my sister mentioned in passing that the MC was in the kitchen experimenting with beetroot macaroons (yes, you read that correctly) for possible inclusion in his pre-lunch canapé selection on Christmas Day. They are to be served with smoked salmon and horseradish sauce, apparently. I will try to keep you updated with any further exciting canapé innovation news from north Yorkshire as it happens.

My sister asked this not just because I am writing so much, but because she has heard me talking for the last few days in what my OH has tactfully called an ‘effervescent’ manner – I know that I am speaking about twice as fast as I normally do, with great urgency, and a certain amount of hilarity. The general consensus of the entire Fo family is that I appear to be hopped up to the gills on amphetamines – but I’m not, I’m really not.

They give you steroids for the first three days of chemo, but I stopped taking them over a week ago, so it’s definitely not the Dexamethasone. So that brings up the question of all the other meds I’m now on, and to one very strange facet of being treated for cancer. At this stage, I’ve almost forgotten about the cancer: my on-going battle, for the next 17 weeks, is with the chemotherapy drugs, and their side effects, and the side effects of the drugs they give you to counter the side effects of the chemo, and so on ad infinitum.

Last week, before having chemotherapy treatment for the first time, I was feeling perfectly well: the cancer had been cut out of me, I’d had a few weeks to recover physically and mentally from the operation, and I’d even been able to go swimming a couple of times. I was sleeping through the night again (inability to sleep is very common in the first couple of months after a cancer diagnosis), and feeling just about as well as you could do, in the circumstances. I was as ready, mentally and physically, for chemo as I would ever be.

A week later, and I had become a tormented lab rat, in a state of extreme physical discomfort and agitation, running round and round inside my cage in a frenzy of distress. Hand in hand with the unrelenting, overwhelming and debilitating nausea came a feeling of constant agitation, mental hyperactivity and general SPEEDINESS, and unless I take a sedative, I just cannot seem to slow down.

There is a voice in my head, constantly, a narrative voice which seems quite independent of me, somehow, observing what I’m going through, commenting on it and then demanding that I write it all down. Now. This voice simply WILL NOT SHUT UP, except with the help of Lorazepam, and then as soon as I wake up again it continues as if it had never been silenced.

 I mentioned this bizarre phenomenon to a friend, who said not to worry, all inspiration is good, but added thoughtfully that should, by any chance, the voice start telling me to do anything other than writing, say, to give a random and entirely hypothetical example,  should it urge me to go after my loved ones with a carving knife, it might be wise to seek medical help immediately, might it not?

I assured her that if such an eventuality arose, I would do exactly that.

So, in addition to the Nausea Demon, I seem to have acquired a new long-term guest, the Chemo Muse. 

There are now 3 of us in this relationship, and we’re all going to have find some way of co-existing for the next 90 days, as neither of them is showing any inclination to make their visit a brief one. I had anticipated drowsing my way through chemo and its attendant crippling fatigue with lots of sofa time, napping, reading and watching boxed sets of The Killing, but that is quite evidently NOT going to happen.

The Nausea Demon is now more or less under control as long as I remember to take my meds on time, but the Chemo Muse is under no such restraint; as soon as I wake up, she wants to talk. She’s all excited, happy, impatient, pouring into my head a constant stream of ideas for blog posts, and snappy titles, and suggesting issues around cancer and its treatment which it might be useful to discuss.

The Chemo Muse won’t shut up, and she keeps nagging at me to make a written note of what she’s saying, IMMEDIATELY, lest I forget a single detail. The other day, walking down the road on the way to the Brook Green Tesco, I found myself stopping and scribbling down several pages of notes, my notebook perched on top of a handily sized stone gatepost. The Chemo Muse is like a Twitter feed running constantly through my head – and indeed, some of what she says goes straight down on to my own Twitter feed.

I don’t know what is causing this, but I have to embrace it: it’s a hell of a lot better than lying on the sofa for the next 90 days thinking about the nausea, listening to my hair fall out, and sobbing over The Pity of It All, but it’s really quite wearing. While I’m awake, there is no down-time: the Nausea Demon down in my stomach, and the Chemo Muse up in my head, are at it, hammer and tongs, through the hours of wakefulness, which are long, as I wake at 5am, my brain bursting with ideas; thank God they’ve given me the Lorazepam, which needs to be used with caution but does ensure that in extremis I can shut up the Chemo Muse and get some sleep by the simple expedient of knocking myself out.

The Chemo Muse isn’t like me, my normal self: she’s hyperactive, on the go from morning till night, full of energy, always looking for the next thing to do. The Chemo Muse is not interested in sofas, or having a little nap and no, she doesn’t want to sit down with a nice mug of tea and a digestive and read the paper for a bit. She wants to GET ON and DO STUFF, especially writing about the experience of chemo.

I have a good friend back in Turkey, an American friend, T, who is the living embodiment of the phrase ‘a ball of energy’. I have always been impressed by, and in awe of, her phenomenal energy levels, constant purposeful activity, and the amount she achieves every day – and could only think that there must be a genetic reason for this, that her body must have a much speedier basic metabolic setting than mine. T leads life at a pace I could only begin to imagine – at least until the Chemo Muse moved in last week. Now, for the first time, I have some sense of what it is to be my friend T.

I’m enjoying it, and going along for the ride, as long as it lasts - once the Fatigue Demon arrives, as he surely will, he may have the power to shut down the Chemo Muse altogether.

 

Nor am I enquiring too closely into whether the appearance of Chemo Muse IS simply a pharmaceutical artefact or whether, as another friend suggested, she might be a coping mechanism, a way of my brain helping me to bear the horror of what has happened to my life in the last few months, and the knowledge of what the chemo is now doing to me, and will continue to do, only more so, over the next 90 days.

Explanation, I’ve decided, and precise delineation of cause and effect, are not really important here: the Chemo Muse has come as a completely unexpected, but very useful guest, and she is welcome to stay for the duration. And let’s just file her, as suggested by John Lennon, under the category of ‘Whatever gets you thru the night…’