Tuesday 24 January 2012

Black or white.

One of the trickiest things about trying to organise my life right now – especially with the increase in the number of times we’re having to visit the hospital – is that, inevitably, the days on which we’re at our various appointments frustratingly tend to coincide with the days on which I’m less ill. It’s just the way it has to go, really: you go in for your tests or your consultations or – more to the point – your chemo, and it does exactly what it’s meant to do: knocks you down for a few days before your body is well enough again to take on the next dose.

What that means in practice, however, is that the times when I’m feeling more like me – the times when I feel like sticking on a bit of slap and pulling out a nice outfit, for example – are those when I’m seen by few other people than medical staff. Hence the limited friends and family who get to visit me these days think I’ve become some kind of pyjama-bound, greasy-haired sloth, while my nurses think I’m some kind of overdone, wannabe glamourpuss who’s striving for the questionable title of the Bet Lynch of the chemo room.

Along with my increased tendency to dress like a normal (okay, normal-to-mutton) human being, however, comes an increased tendency to act like one too. And so, again, those who ought to be getting the good stuff from me instead find themselves on the receiving end of the hurt and the whining and the shitness, while those I probably ought to care less about impressing (however many needles they might be wielding) get the breeziness and the plucky stoicism and the daft jokes. Add to that the fact that P and I have been making an effort to punctuate our increasing hospital visits with other, pleasant, normal-person things (lunches, visits, supermarket-shopping…) in order to say that we were able to do something else that day, and you’ve got yourself a screwed-up existence in which our more fun days are gradually becoming those on which we’re at the Royal Marsden. And don’t get me wrong, Marsden, I bloody love you and everything you’re doing for me – but surely nobody could argue that this is the right way round for things to be.

A textbook example was the surgery I went in for last week. Scheduled, ain’t it so, in Week #3 of my chemo schedule – aka the ‘good’ week – the op was designed to insert a Portacath (or, to give it its proper, so-wanky-it-can-surely-only-have-been-dreamed-up-by-Sky-Sports name: a ‘PowerPort’) inside my chest in order for the nurses to get chemo into me and blood out of me, now that the veins in my arm have finally taken early retirement. I didn’t ought to moan about it, particularly since the PowerPort is going to make my life (not to mention the nurses’ lives) so much easier and finally save me from an existence spent with a forearm full of bruises, but I couldn’t help but see the whole thing as yet another hefty hospital visit that was encroaching on the piteously scant me-time I get these days. Thankfully though, all went to plan – the op went well, the surgeons nailed the proper placement of the port, and we eked out as much fun from a hospital stay as P and I (and my parents, who kindly came down to London to have an excuse to visit Carluccio’s be with us) have become expert at doing.

From time to time, though, that fun isn’t something you brave-facedly enforce on such a situation, but something that’s there anyway. Hence, as I’ve begrudgingly come to accept of The Bullshit all the way along – with the wig-fittings, with the nipple-surgery, with the incessant gooning around in front of important consultants – the more entertaining parts of it don’t always exist just because you’re feeling better; they’re there because, despite the trauma or the misery or the heartbreak of what’s at stake, sometimes the stuff that isn’t meant to be funny is that which has you laughing the most. (You can’t imagine how hard it was to sidestep the ‘humour in a tumour’ pun just then.) And last week’s surgery was a case in point.

Now, I’ve always secretly enjoyed a general anaesthetic. Perhaps that’s just tragically symptomatic of the oh-so-exciting life I lead, I dunno, but each time I’ve had one I’ve nerdily taken pleasure from the little rituals that come with it: the there’s-no-way-you’ll-ever-get-me-to-sleep-mate stubbornness directed towards the anaesthetist; the disbelief of the wholly unnoticed passing of time in which someone’s sliced you open and stitched you back together again without you knowing a thing; heck, I even like those shabby gowns that take years of practice to tie in such a way as to not expose your bum. It’s a bit on the ridiculous side, then, that I always come round from a general anaesthetic to find myself in a quivering mess of tears, just as I did last week.

The waking-up is a funny old experience, ain’t it? And recovery rooms, I find, are funny old places, complete with distrustful wall clocks, body parts drawn on with indecipherable felt tip, and a trippy, morphine-hazed, slowly dawning realisation that you’re alone in neither company nor disorientation. I guess when you add the amount of morphine I’m on already to the additional painkilling injections I received in the recovery room, I’m bound to have seen this particular post-op experience through peculiarly rose-tinted spectacles. But I defy even the most reliable of recovery-room witnesses not to have been as weirded out as I was to wake up after surgery – both in my usual quivery, moist-eyed way and in considerable pain – to hear not the soothing voice of a reassuring nurse, but a thunderously confident, X-Factor-audition-style belting-out of ‘Heal the worrrrrrld, make it a better plaaaaaace…’ from across the other side of the room.

‘What the f--?’ I said, immediately snapping out of my tears and opening one eye in the hope of catching someone’s attention.
For youuuu and for meeeee and the entire human raaaaace…’ Seriously, what the actual fuck…?
‘Lisa, hi!’ said a nurse to my left. ‘Don’t worry, darling, it’s all over. Everything went we--’
‘But I can hear…’ I began, halting her in her post-procedure practice.
There are peeeeeople dyiiiiing…’ Was this for real?
‘Now, if you could tell me whether you’re in any pain...’ she re-interrupted in such a blithe way as to make me certain I’d been given an overdose of anaesthetic so powerful as to wake up imagining I was sharing a recovery room with a female Michael Jackson impersonator.
If you care enough for the liviiiiiiiing…’
‘Pain? Er, yeah, actually,’ I nodded, feeling no sensation in the area that had been operated on, but instead a blinding throbbing in my back and shoulders.
‘Okay darling, that’s no problem – we can give you some morphine to help.’
Make a better plaaaaace…’ There it was again. And getting louder.
‘But I’m hearing…’ I persisted. ‘There’s a…’
The nurse raised her hand to silence me. ‘Lisa, if you could just tell me where the pain is, exactly…’
‘For youuuuu and for meeeee…’ Seriously, what had they put in those drugs?
‘But nurse, listen to me! There’s a…’
‘Okay,’ she interrupted huffily, clearly getting narked. ‘Maybe you can just point to the pain?’ And so I raised my arm and directed it straight at the singing cubicle opposite. (The only one, I hasten to add, with a curtain pulled around it.)
‘Ahh,’ she said. ‘That.’
‘Yes! That!’ I said, perhaps a little too loudly. ‘Is there really someone singing Michae--?’
‘Yes, darling,’ she said drily, as though she’d been subject to it for roughly the last three hours. ‘But the other pain?’ she asked, before I duly complied, gesturing more seriously at the areas in question.

Returning with the morphine injection, my nurse explained that having it would require me spending a little longer in the recovery room. Had I heard my crooning cohort breaking into ‘there's a choice we’re makiiiiiing, we’re saving our own liiiiiives….’ prior to the needle being administered, I might have thought twice about my prolonged stay. But, alas, it was too late – and, with several more milligrams of the good stuff in my system, the episode continued to get weirder.

As with all the other patients in the room, the nurses would occasionally nip over to check on The Singing Spirit of Jacko in the opposite cubicle: the only time, it seemed, when they could get any non-vocal communication out of her. Although with such conversational nuggets as ‘you girls didn’t ought to wear so much of that make-up muck when you’re on shift’ and ‘don’t tell me to be quiet – my husband’s a drug dealer and he’s only got 40% of a brain’, I dare say they wish they hadn’t bothered. Someone who definitely wished he hadn’t bothered, though, was her surgeon who, upon popping into the room to let her know that her operation had gone well, was met with the words: ‘That’s wonderful, doctor. Now I must do something for you,’ followed by a swift rendition of Doctor My Eyes.
‘Well at least you can’t say she’s not in context,’ I thought to myself, now onto my second morphine injection, druggedly nodding my head along with ‘doctor my eyyyy-eeees and tell meeeee what is wrong…’
‘Erm… er, that’s lovely, thank you,’ the serenaded surgeon was saying, swiftly backing into the cubicle’s curtain, ‘but, um, I’m afraid I’m due back in… er yes, see you later, then.’

By my third injection, however, I wasn’t so much enjoying the craziness as frantically planning my own swift exit, stuck in a bizarre Sophie’s Choice between fleeing from the musical mentalist and getting the requisite morphine I needed to keep my pain at bay. Helping in no way was my position lying directly opposite the world’s slowest-moving clock, from where I was becoming worried about what P and my parents must be going through upstairs, given that they’d been told to expect me back at 3pm and it was now pushing 6. And all the while, the rest of us were being treated to an incessant singathon of tunes spanning the entirety of the Jackson career: everything from Never Can Say Goodbye to They Don’t Care About Us and all kinds in between, each with lyric-snippets bizarrely in-keeping with our recovery-room situation. Or, at least, they were until the moment at which I decided I needed a wee. Naturally, then, with my own curtain now drawn and my bare arse perched on the edge of a bedpan, this was the moment at which my melodic mate chose not to help me along by singing, say, Earth Song (‘what about raaaaain…’) or Will You Be There (‘hooooold meeeeeeee like the river Jorrrrrdaaaaan’) or even sodding Don’t Stop Til You Get Enough, but instead switch artists altogether. To Madonna.

Picture the scene, then, if you will: me, in going-nowhere agony, naked but for a pair of DVT socks and a now-untied NHS gown, gripping the sides of the bed, determined not to topple off my bedpan while desperately trying to force out a piss, with a nurse – a nurse I’d told I couldn’t possibly wait another second without wetting myself – willing me along from the other side of the curtain… and all to the sound of Like A Virgin.
I made it throooooough the wilderneeeeeeeess…’
‘Let me know when you’ve finished, Lisa, and I’ll empty the pan.’
Somehow I made it throooo-uuuugh…’
‘I’ve not even ruddy started yet,’ I snapped back, hurriedly trying to conjure up images of Madonna’s Cherish video with the mermaids and all the water.
Didn’t know how lost I was until I found youuu-oooh…’
‘Are you getting there?’ asked the nurse again.
I was beeeeeat…’
‘Guh. I can’t,’ I grunted.
‘I really need to,’ I explained, ‘but I think I’ve got performance anxiety.’
The nurse fractionally pulled back the curtain to peer at me and, raising an eyebrow as she nodded towards our crooning cohort, added: ‘Yup, but we both know someone who hasn’t...’ A quip which, mercifully, was enough to help me along with my water-based percussion.

See, the recovery room of a cancer hospital doesn’t, on the face of it, sound like the most fun of working environments. But coof, I bet they see some strange old sights in there. Because really, what’s normal in a recovery room? I mean, you hear all sorts, don’t you – people calling out their surgeon’s names, folk chatting ten to the dozen, patients crying or laughing or screaming obscenities… but, from what I could gather, none of them had previously been treated to a full-on set-list from the 1980s. And when you’ve spent your day replacing bloody dressings and emptying bowls of hard-fought urine, it’s got to be a relief to be able to add the odd amusing story to the mix too, right?

That, though, is a reality that works both ways – and so, just as I’m sure those nurses don’t want all their work stories to be bedpan-based, nor do I want all my fun stories to be hospital-based. But lately, with the balance of good days tipped disproportionately in the Marsden’s direction, that’s the way it’s been looking. I’ll take it, like (I mean, hell, I’d rather feel pain to a farcical soundtrack than nothing at all), but it’d be nice if, just once, the stories I could tell were based somewhere other than my hospital or my doctor’s or the edge of a sodding piss-pot.

It’s something P and I discussed yesterday, when we had a visit from one of our counsellors. It came at a fortuitous moment, following a particularly dark few post-chemo days of the usual physical shite along with the now-standard trio of chemical-depression days in which it becomes evermore impossible to grapple with the sheer bloody strain of it all. You see, back in the day, when I was on a set schedule of chemo (six cycles and you’re done) there was an end point; a finish line to make it to. But now I’m on chemo indefinitely, with no such celebratory end point – we’ve just got to keep on for as long as it’s working. Hence, on the days when it’s hard to find the fight through the fog, continuing with a life like that – a life like this – seems like the kind of colossal effort to which, daft as it might sound, there ought to be way more reward than simply sticking around for more of the same. And so yesterday’s counselling session, as I’m sure you can appreciate, was rather nicely timed. 

They’re largely informal appointments, thankfully, just as I think these things ought to be – both in deference to mine and P’s respective ages and the point I made above about none of this Bullshit stuff being as simplistic as to always be impossible or always be jovial… or, indeed, anything else in between. That’s not to say, however, that the sessions aren’t hugely helpful to us – heck, we’re as shocked as anyone what we’ve taken from them. I mean, upon initially being told that we’d be following a ‘mindfulness-based cognitive therapy approach’, both mine and P’s wank-alarms chimed in unison but, in fact, it’s a process that – we can’t help but confess – has helped us to become more accepting of our situation, and of the feelings that come with it. And, as someone who’s previously gone down the CBT route, I’m also rather chuffed that it’s an approach that comes with far less homework and far more, well, chatting.

And so yesterday, we chatted about my surgery and the not-so-soulful soundtrack that came along with it; about the fun ways in which we’ve tried to make the opening month of a shaky-looking year more bearable; how I’m freaking shitting myself about my brain-and-spine MRI on the 31st; how I want the (favourable, please) results out of the way so I can get planning a much-deserved spring break to New York; how I’m going to start poking in the eye the people who, even despite posts like my last, are still. just. flatly. refusing. not to fawn over/weep at/declare eternal love for/grieve me at every sodding opportunity (HELLO! I’M STILL FUCKING HERE!); how spending so much time at home has turned P into the kind of bloke who’s become dangerously attached to his slippers; how I could never have anticipated how purposeless I’d feel now that I’m unable to work; and how at least the new, weird-ass-looking, PowerPort-disguising bump in my chest might at least give me cool-points in Camden pubs where I can pretend it’s a microdermal piercing. (‘Yeah, AND I can insert needles into mine.’) 

It all ended, as the sessions with our brilliant Trinity Hospice counsellor tend to do, with daft talk about P and his new shed/who ate the most cheese over Christmas/devilish things to say to folk who stare at me when I’m in my wheelchair, topping off an enormously useful 40 minutes in which I’d both sobbed to the point of bloodshot eyes and laughed to the point of thigh-slapping – again, just as I think these things ought to be. Because that, alas, is the way life is, ain’t it? Sometimes tragic just comes with a side of funny.

Of course, it’d be simpler if it didn’t. It’d be simpler if our feelings really were as easy to separate as the impeccably kept filing cabinet in my Virgoan mind would like to think. And it’d be a whole lot simpler for me personally if it weren’t for the wrongness of my hospital days also being my good days, the injustice of my iller moments coinciding with family-times, and the unfairness of my emotions never falling firmly into one camp or the other. I suppose right now I just can’t get past how frustratingly imbalanced life is on the fun-scale, is all, and there isn’t a star in the sky I don’t find myself childishly wishing on in the hope that the balance could be tipped just a little bit more in the other direction. But, as even the performing patient – or, I dare say, Michael Jackson himself – couldn’t fail to argue, it just ain’t as black or white as that. But sheesh, it’d be really bloody nice if, somehow, I could make that change. (‘S’gonna feel real gooooood, gonna make a difference, gonna make it riiii-iiiiight…’)


Unknown said...

"Bet Lynch of the chemo room" - classic! Great post Lisa, fingers crossed for the 31st!

marsha said...

This is an amazing story.
Snowy love from Toronto xx

The Sims said...

Last time I came round from a general anaesthetic I treated the whole ward to a rendition of Robbie Williams' Angels at deafening volume. Think I was 13 and had just had about four of my teeth taken out.
Then last year I had to have a colonoscopy (nothing like a bit of anal invasion usually reserved for the elderly - I'm only 27!) and the drugs made me talk about frogs to anyone who listened.
Hopefully I made someone laugh!

Dave said...

"Can no longer work", that is the Bullshit. What you write is the work of genius. You have a gift. That you can relate to us your innermost thoughts in such a wonderful manner from a hospital bed or wheelchair with such clarity and humanity is amazing and appreciated.

Hayley x said...

I can't knock your writing because as always, you're right on the money, fantastic, wonderful etc.
But I can and will mock your football team..Derby..really? FOXES *cough*

Love your fellow East Midlander in SW London

billy said...

I agree with Dave.

Jane said...

Hilarious and perceptive as always.

I too have always been on my best behaviour in the chemo ward. Even when I am steaming over with impatience\anger\ tears\ [insert emotion] inside.

When I came round from my last anaesthetic I grabbed my anaesthetist's hand, told him I really loved him and that I hated the last one who made me pay up front.

Thinking of you.

janjan said...

lots and lots of luck for 31st xx

Unknown said...

I agree with Dave too! Good luck for the 31st, I'll be thinking of you.
I have a mammogram on the 30th - the 1st one since I was diagnosed last year that is. On the bright side, at least it'll be a quicker process this time, given that they only have to do one side!
Fingers (& everything else) crossed for both of us.
Love Chez. xx

Catherine O said...

I once came round from an anaesthetic just as they were taking out the breathing tube. There was only one reason for that feeling, I figured - I must have been throwing up a gallon of red wine. I spent the next 10 minutes or so apologising to anyone who'd listen for my drunkenness.

Loved the description of the recovery room, surreal and hilarious :)

findit13 said...

My surgeon advised me that during my last surgery I ripped the drainage tube out, and tried to get off the table. I'm glad he let me know, I always seem to sleep through the good stuff :-) He also said one of the nurses had to run outside and find some builders in a white van to help hold me down. He was kidding of course, but it did sound like one of those parties I've heard about, and never wanted to go to. I'm so glad I didn't have your singing roommate, omg, that would drive me nuts. Good luck on the 31st.

Nonamoose said...

My best recovery from anaesthetic story is thus (and it's quite boring cus nothing exciting *ever* happened to me...). Should say that I was a little student nurse at the time doing my theatre placement.

A 6ft built like a brick shithouse guy from the local prison was having his appendix or some such out and came round from the op crying like his heart was fit to break - he was less concerned about how his surgery had gone and his pain levels etc and more concerned about us not telling the prison officers that he was crying cus he didn't want his reputation destroyed back at the jail :-D

It made me laugh but to be fair, I was 17 at the time :D

Madeleine said...

My brother came 'round from an anaesthetic saying "All I want is a fucking pint!". (Apparently the staff had a word with him about alcoholism after that which both amused and annoyed him.)

SallyAnn said...

Last time I had an anaesthetic apparently I smiled at the recovery nurse when I woke up (it was probably the opiates!). She said I made her day cos nobody ever smiled at her - aaw! Tons and tons of luck for the 31st xxx P.S. I agree with Dave too xxx

Ann K said...

Lisa, you are a Bloody Genius; I have been following your blog (and read your masterpiece of a book) since I was diagnosed with the Bullshit a couple of months before you in 2008. Your writing bowls me over every time; your descriptions and perceptions of this Bullshit 'journey' (another wanky expression)describe exactly how I have felt, but have been utterly incapable of articulating.
Your account of the recovery room is comedy cold, and I hope that was your intention, cos I laughed my socks off!
Lisa, I'm not weeping for you, nor wringing my hands. I think you are amazing; you, your talent, your man, your family - they all rock. You are most definitely 'STILL FUCKING HERE' and noone is in any doubt about that.
Will be thinking of you on 31st and sending good vibes your way.
Hugs from your number 1 fan (well, one of the many). Ann K xxxx

A Hong Kong Gardener said...

Peeing into bedpans is always shite, performance anxiety or not


cheers Lisa.