Wednesday 29 February 2012

If I can make it there.

As I’m sure any cancer patient would admit, one of the biggest mind games that comes with The Bullshit is the nigh-on-impossible task of continually having to separate what you can understand from what you can accept. I suppose in many ways it’s like the forgive/forget thing. I mean, I can just about forgive Take That for their horrendous cover of Smells Like Teen Spirit, for example, but 17 years of cringing, craploads of therapy and a serious aversion to leather trousers later and – shudder – I’m afraid I still can’t forget it.

Similar can be said, then, for what’s happened – happening – in my body. I can understand where the cancer’s found itself, what it’s done when it’s got there, and why it’s never going away – but I’m a long old way off accepting it just yet. And that, I think, is the reason why I’ve been having such a hard time on the depression front lately: that continual beating myself up about still not having come to terms – hell, even being able to believe – what I’m dealing with.

The gap between understanding and acceptance even runs to the smaller things, too, like the necessity to spend so much time in waiting rooms, the drag of taking so many pills each day, and last week’s inexplicable presence in the chemo room of The Most Annoying Man On Earth: an unbearably merry dude with a painted guitar and an entire back-catalogue of wince-tastic, headed-for-Jerry-Springer songs about how marvellous and magical he was to have beaten cancer. (For he, of course, is the only person in the world ever to have dealt with it.) So yes, I can perfectly understand why the Royal Marsden would allow him to sing to their patients… but accepting the offensively wanky intrusiveness of some perma-grinned dickhead singing ‘you’ve got to feel in order to heal’ right into my terminal-diseased face? Hm, reaching acceptance wasn’t so much on my mind as wondering how far up a colon it’s possible to shove a guitar.

What I'm struggling to accept this week, however, is all the more difficult to swallow: it’s looking like I’ll never again be able to go to the USA… and all thanks to the insurance industry’s oh-so-thoughtful decision not to go within a barge-pole’s length of me and my disgustingly diseased old bones and brain.

And who’d have thunk it of them, eh? Here we all were, blissfully pootling along in our lives, assuming that insurance companies were the meerkat-chirpy, opera-singing, dog-nodding, Nectar-point-gifting, underdog-championing, brightly-animated purveyors of cheeriness and caring that they’d led us to believe. Well, I hate to break it to you, dear reader, but – much like day you heard the news that it wasn’t Santa who delivered presents to the foot of your tree but a sherry-drunk, pyjama-wearing parent – I must today burst your bubble with the revelation that insurance companies aren’t here to save us, offering up can’t-miss deals in the process, but are, in fact, utter bastards, hell-bent on screwing us for every quid we’ve got. The kind of bastards with the gall to quote you £36,000 for single-trip insurance on a week-long break in New York before then hearing more details of your diagnosis and, actually, withdrawing their oh-so-reasonable offer in the first place. Yes, folks: I’m sorry to be the one to break it to you, but insurance firms are bastards. Bastards with a capital bee-yatch.

Oh, hang on… you knew that already? Dammit, I thought I had a scoop there.

In short, then, nobody will insure me to travel to the USA. Not the ordinary companies, not the cancer companies, not even the we’ll-take-the-hopeless-cases-that-no-bugger-else-will-go-near companies. And no amount of ‘terminal cancer patient taking the trip of a lifetime’ storytelling is seemingly going to make a difference.

The thing is, I can perfectly understand the decision. I can perfectly understand that, with my health history – hell, my health present – I’m just too risky a customer. I can perfectly understand how reaching New York and having a problem with, say, my pain levels or my sickness or the migraines caused by my brain tumour could, thanks to the USA’s freakishly costly health system, easily run up a bill in the millions. (Hence the reason we couldn’t possibly risk going there uninsured – at least, not without the back-up of the combined estates of the Branson, Trump and Hilton families.) I can even sort of understand the businesslike attitude to it that prohibits the robotic, emotionless insurance-company telephone operators (well, all but one) from speaking to me like a human being. But never getting to see New York? Never getting to visit the White House? Never again going to the States full stop? That’s altogether more difficult to stomach.

It's not even easy to forget. If I'd compiled a ‘bucket list’, finally seeing New York through my own eyes would have been one of the few things on it. (Alas, I don’t have such a list because, frankly, as much as I'd like to go to NY, I’d rather not waste effort compiling the kind of to-do list that’d put my life in the context of all the things I haven't achieved.) Because, as anyone with half an eye open will appreciate, New York isn’t especially simple to avoid – even if you’re in London. I imagined that Andrew Marr’s (somewhat bum-licky) three-part documentary on the Queen might take my mind off things for a while… only to discover that a large chunk of it was filmed in New York. Then there’s the girl who keeps jogging past my window in an ‘I heart NY’ hoodie. Plus all the movies: a significant portion of those I’ve watched lately have been set there. And when you add to that the common cancer side-effect that is the shocking number of times per day you find yourself watching Friends, well, it’s not exactly an easy city to ignore.

Of course it’s not just the New York thing. After last year’s wonderful road-trip through California, there was plenty more of the States that P and I wanted to see. One of my very best mates even lives there, ferfuckssake, and this is how she’s finding out that I’ve made my final visit.

I know that, in the context of the things about which I should be having a good whinge, this probably seems rather insignificant. And then, of course, there’s the argument that I should feel lucky even to have visited the USA so many times in the first place. And I do! Heck, most people don’t even get to go there once in a lifetime. And besides, it’s not like there aren’t plenty of other (more easily accessible, with simpler-to-negotiate health systems) parts of the world that I’d love to visit, even right on my doorstep. I suppose the New York thing was just symbolic of yet another freedom I’ve lost thanks to The Bullshit.

I’ve got my head around it though. Because, as I say, I can perfectly understand the reasons why. I even think I was heading towards a level of acceptance, keeping an open mind as I opted for a more ‘I know it’s a long shot, but…’ approach with my final, last-hope of an insurance company. They knocked me back as well, of course, but at least it was done with empathy. I even laughed it off with the phone attendant at the end of our call, listing all the places in the UK that probably ran rings around New York anyway. (Coventry, Hull, Milton Keynes…)

After making myself a brew and resignedly yet contentedly tutting as I gave my Times Square snow-globe a shake, the doorbell rang (as it does several times a day thanks to my somewhat incessant online shopping habit). And behold: another Amazon parcel. I tend to order so much stuff online these days that I can never quite remember what’s coming next, but I ought to have had an inkling about this particular package…

After 32 years, I think it’s fair to say that I understand how planning ahead can occasionally bite you on the ass. As for acceptance of that fact, however? Well, let’s just say that all I’m accepting in this case is that travel guides make one hell of a dent when you chuck them at the living-room wall. 

Friday 17 February 2012


I'm getting another tattoo. I appreciate that opening one’s blog post with such a revelation probably isn’t the best way to break this news to those who’ll disapprove (actually, who am I kidding – it’s the perfect cop-out way to break the news to those who’ll disapprove), but there we have it. It’s happening. The choice has been made. Get over it. Yes, that means YOU, head-shaking little brother.

It’s not happening yet though. It can’t. Not for physical or health reasons or whatever; simply because I’m just not quite there yet. See, my new tattoo is a bit of an instruction; a design for life; a mantra, if you will, penned by the hand of (who else?) my favourite Beatle. It’s the way I want to live my life. But, hugely frustratingly, it’s a way of life I haven’t quite figured out yet.

I’ll not tell you just yet what said ink is going to read – I’ll save that for the big reveal at the end of this post – because first, I think, I’ve got some explaining to do. Not to the brother/Mum/Dad (in that order) who’ll have tutted out a disappointed ‘Ohh, Li-sa’ with my opening sentence, but instead to anyone else who cares about me, or how I’m doing.

And so to another revelation: one which the above parties already know about but I’ve been too frightened to tell many others (including, even, some of the medical professionals charged with my care), for fear of how they’ll react, or of opening a box I’ll never again be able to close, or of being treated with yet more tilty-headed kid gloves. But enough of the preamble, and onto that insufferably wanky of ‘admitting-it-is-the-first-step-on-the-road-to-recovery’ tactics: my name is Lisa and I’m suffering from depression. (Hi, Lisa.) But don’t worry cos, hey, at least it might save me some shit on the tattoo thing.

Similarly frustrating for me in all of this is the terminology. ‘Suffering from depression’: a term that, thanks to the evolution of homo sapiens into intolerable, perspectiveless drama queens, has rapidly lost the seriousness of its meaning to whiny gobshites who are ‘depressed’ because they’ve seen the object of their affections copping off with someone else, or have spent up before payday, or have got to switch desks at work. These futnuckers have made it so much harder for the people genuinely suffering to be heard; to be taken seriously; to be understood, meaning that we’re embarrassed not just by the terminology (my parents have taken to calling it ‘low’; my best mates ‘going underground’), but by the suspicious sideways glances and invisible inverted commas that come with it. “Oh, right: ‘depressed’. Of course you are.” Well, futnuckers, I actually am. And here, if you’re interested, is how.

It began… actually, I don’t know exactly when it began. I’m tempted to say it was before I even got the first of my secondary diagnoses, back when there was that awful inkling that something was seriously wrong. Either way, I’d say it certainly started before the second of those diagnoses, with the added news about my brain tumour.

The mornings were the most revealing: the inability to get going, the heightened (and increasingly terrifying) panic attacks, the growing number of occasions on which I’d wake up and quite honestly wish I hadn’t – or, at best, would open my eyes to that ‘oh great, this again’ feeling, dreading another laborious day in a life I used to love that, thanks to The Bullshit, has now been turned inside out. I’m talking about all of this as though it’s in the past tense when, in truth, these things still remain, along with a lost interest in the stuff I used to enjoy, hopeless concentration, poor sleeping patterns (as I write this sentence, it’s 3.52am), a continual feeling of guilt and burden, and enough tears to fill a paddling pool. It’s been bad. Far worse than I'm letting on here. Yup, heaven knows I’m miserable now, all right.

So, as well as the psychotherapist and the counsellor and the visiting district nurse and the GP who doubtless had to send someone out on an emergency tissue-run after my visit, I’m now on antidepressants. And yes, longtime blog readers, I appreciate that after the Chemical Brothers episode, that’s something I said I’d never do again but, hey, I’m fast learning that not all flippant promises can be kept. (Rather like the one I made saying I’d get ‘oh ferfuckssake’ tattooed onto my forehead should I ever receive another diagnosis. Suffice to say, that’s not the body part I’ll be aiming at with the new ink. Nor do I recall any Beatles lyrics of the ‘ferfuckssake’ nature.)

I’m sure the above revelation has hardly come as a surprise to you. I mean, sheesh, of course I’m fucking depressed. Equally, though, you might be shaking your head just as much as I’m sure my brother still is about the tattoo thing (seriously, Jamie: get over it), thinking back to the wonderful news at the end of my last post and wondering what kind of a hopeless lost cause could possibly be experiencing such a shit time when they ought to be celebrating. And I did celebrate, as you’ll have read. For about two days. After which all I could see was the halting of The Bullshit’s process as an indication that nothing had changed; as a reminder that no amount of slowed cells could turn this from a terminal into a curable case; as something that had bought me more time in a life from which I’m taking piteously little enjoyment.

But though it felt like it lasted barely twenty sodding minutes, I was able to celebrate, scant as that celebration was. That’s got to be something, right? And there’s the thing with depression. It’s like a Smiths record with all-too-infrequent (but nonetheless wonderfully appreciated) chirpy Johnny Marr guitar. And yes again, longtime blog readers, I know this is an analogy I’ve made before, but frankly (Mr Shankly) I simply can’t think of a better one either for or under the circumstances.

See, being depressed doesn’t mean I’m sobbing under a duvet in a dark room 24/7 (though it happens rather more frequently than I’d like), nor does it mean I’m completely incapable of making plans or putting on make-up or cracking a joke. Because, whenever I can summon the energy, I’ve got a pretty damn polished ability to hide whatever’s happening beneath the surface. In fact, lawks, I should bloody well win awards for it. ‘And Brave Face of the Year goes to…’

But, the way I’ve come to see it this past week or so – mostly thanks to the advice I’ve taken – depression is something that’s best kept unhidden. And so I’m kind of thinking of it as like starting Weight Watchers: it’s only going to work if you tell everyone about it. Which is ironic, since I appear to be gaining a kilo with each chemo, despite the unspeakable agony of shitting out a weekly brick of bulky concrete turd and puking with such prolific, projectile-spinach-from-my-nostrils panache that I’ve begun to score each upchuck as though it were a ballroom dance. (TMI? Darling, you are SO reading the wrong blog.)

Since we’re sharing, then, I might as well tell you what I think the problem is: I just haven’t found a way to live yet. I can’t understand how people do live when they’ve been told what I have. It feels like someone hit a pause button on my head back in October and I’ve achieved the sum total of nothing in the meantime, while everyone else’s lives have been merrily trotting along as normal around me. And how have they? How is that even possible? Everything has changed! Everything! So how, in the name of Zeus’s butthole, has the world just not sodding ended? Because, in so many ways, it honestly feels like mine already has.

But even despite the fog of depression, I still know deep down that there’s nothing I want more than to find a life. Yes, I know it’s going to be different; yes, I know it’s not going to be the one I’d necessarily have chosen. But I’ve simply got to find a way of taking enjoyment from more things than just my husband and my family – without whom I’m sorry to admit I’d have given up already.

You’d think, wouldn’t you, that upon being told you had a terminal illness you’d be seizing the day and making the most of each moment and squeezing every last bit of enjoyment from your life. But, as my mate Tills rightly pointed out this week, in that dream scenario you don’t have the illness to contend with and the limited mobility and the never-bloody-ending hospital visits and all the shite that comes as a side order with treatment. And so, in the negligible time there is to actually live your life as you’d imagined you would, well, you just don’t chuffing feel like it, okay? You feel like getting in a huff and stomping your feet and getting outrageously angry that you’re in this predicament. You feel like wailing and howling and shrieking out at the appalling unfairness of it all, and beating yourself about the head that, even after months and months of time in which to get used to your shituation you STILL JUST CAN’T FUCKING BELIEVE IT.

But is that how I want to live? Of course I ruddy don’t. I want to get pleasure from my life. I want to love it. I want to carry on as though I’ve got years and years left in me (because who knows? I might have). I want to go on extravagant numbers of holidays. I want to have sex with my husband in giant hotel beds on cheeky weekends away. I want to be good company. I want to be a better wife. I want to feel comfortable being left on my own. I want my husband to be able to go to work more often. I want to be funny. I want to look like I used to. I want to be ambitious. I want to write books – maybe even screenplays? – and leave a legacy that’ll make my family proud. I want to teach my nephew his first swearword (we’re getting there: he gurgled on the phone last night when I said ‘bollocksbollocksbollocks’). I want to feel lucky. I want to stop worrying my family. I want to be inspired. I want to un-learn the daytime TV schedule. I want to have a longer fuse. I want people to know how to act around me. I want to see more of my mates. I want to have a laugh. I want to wake up in the morning and think ‘come on then, let’s ’ave you’ and close my eyes at night with a quietly triumphant ‘ha, not today… and not tomorrow either’. I want to be more than the illness I’ve got. I want to live my life like you live yours: as though it’s precious and treasured and worth fighting for. Because, come on, if I can’t find a way to seize more enjoyment from the admittedly unfortunate situation in which I’ve found myself, what’s the point in putting up with all the crap that treatment brings?

Like I say, though, I’m not there yet. Whenever I am, I'll let you know in picture form (it’ll be stamped on my wrist) but for now I’ve got some work to do. I realise that I’m not going to ‘beat’ depression – just as I realise that I’m not going to beat cancer. But, hopefully, I can find a way to manage it; to cope with it; to stay one step ahead of it. Or, as McCartney once sang: take these broken wings and learn to fly.

Thursday 2 February 2012

The wait.

Waiting rooms are dangerous places. Sure, they might look innocuous enough but, over the many months I’ve surely spent sitting in them, I have in fact discovered them to be pretty bloody dicey. I’d even go so far as to say that they’re actually bad for your health – especially so in hospitals where they’re every bit as perilous a place as a gorilla enclosure at quarter-to feeding time. Don’t be fooled by the helpful leaflets and the welcoming magazines and the muted television that’s seemingly always showing The Jeremy Kyle Show (as if that’s not scary enough) – hospital waiting rooms are treacherous, worrisome, harrowing places; the real-life equivalent of a decrepit underground car park in a slasher movie, with buzzing lights casting flickered shadows on rats scurrying through musty puddles, and a screechy violin soundtrack playing over the footsteps of whichever unsuspecting idiot’s chosen to park there.

Might that be a little dramatic? Well… yeah, okay. But when you’ve spent as much time in waiting rooms as I have, you can’t help but look at them with a naked knowing; a wary trepidation bolstered by that smart-arsed voice inside your head that warns ‘don’t go in there!’

The problem with waiting rooms, see, is that they’re a kind of parallel universe in which anything is possible, where everything is a conspiracy, and in which you can cheerfully convince yourself that the meaning behind even the simplest looking deed is altogether more sinister. In any other space with chairs, for example, the act of two people with clipboards in their hands casually walking into a side-room would be absolutely nothing of note. See the same thing happen in a waiting room, however, and you’ve just witnessed two consultants minutes away from having to impart bad news.
‘Poor them in there,’ I said yesterday, nudging P as we’d just watched this happen.
‘I know,’ he said, immediately understanding. ‘It’s never gonna be good when there’s two of them.’

Across the way, a woman was chewing the rim of her spectacles, her eyes darting from the wall clock to each of the patients called forward as she silently hypothesized about the outcome of her own appointment, and what the significance might be to the fact that she got here before the last three people who went in. Beside us, a specialist approached a worried-looking couple, asking: ‘You did get that scan on Friday, right?’
‘Yeah,’ nodded the woman.
‘Thought so,’ said the specialist, walking off.
The woman’s husband turned a shade paler. ‘What does that mean?’ he asked of his wife, each of them now attaching worrying weight to what, anywhere else, would have seemed such an innocent question.

And then it was our turn.
‘Lisa, hi,’ said the registrar. We grabbed our coats, preparing to be ushered into the side-room in which we’d hear my MRI results. (But which side-room? Is there a favoured room for bad news? Are the ones around the corner where they take you if you’re most likely to cry? And what about the special room on the end; the one with the cushions and the comfy chairs? What if we were going in that room? Then it really would be bad news… they only save that room for the truly terminal consultations – and we should know, we’ve been in there twice.) ‘I’m afraid we’re having some trouble locating some of your scans,’ she said. ‘The other hospital don’t seem to have sent all the images across, so we might be another half hour to an hour chasing them up – I’m really sorry.’
I wasn’t in the least bit surprised given that, the day before at said hospital, my MRI experience had descended into the kind of painful farce that would make me far too angry to write about… but even so, was the problem really that my scans weren’t ready? Or was it instead something they’d seen on the scan that they weren’t happy with? Maybe they wanted to get a second opinion before telling me that we had a whole new problem to deal with? Or maybe – gasp – they were waiting until two consultants were free…?
‘Oh. Okay,’ I said.
‘Are you all right to hang around for a bit?’
‘Sure. Sure, no problem.’
‘Or maybe, to save you waiting here, you could nip out and get a coffee and I’ll give you a call when everything’s ready?’
‘Okay, we’ll do that,’ I said, suspiciously noting to myself what an unnecessarily kind offer that was. Clearly, I surmised, something was up… and with more than just missing scans. But hey, at least she hadn’t told us to nip out and get a tea, eh? For of course we all know that, in waiting room language, ‘get yourself a cup of tea’ means you’ve got three weeks to live.

You don’t need to know about the loos that were blocked in the meantime, nor the hot chocolate that barely filled five dawdling minutes, nor the insane conspiracy theorising that went with it. You don’t even need to know how we’d mentally scripted every possible phonecall we’d soon be making, how my stomach felt as though it was slowly being eaten away by ferrets with blunt cutlery and disgusting table manners, or how fast P drove back to the hospital after we’d got the phonecall telling us to return. What you do need to know is simply that this waiting time – this excruciating, insufferable, torturous waiting time – is, daft as it may sound, worse even than hearing bad news. Because bad news you can deal with; bad news you can do something about. No news? No news is pure purgatory, and whoever said it was better than bad news is a twatclacker of the highest order who deserves to be strung upside down by the scrotum while holding out for life-or-death scan results in a waiting room that’s running three and a half hours behind schedule.

On our way back into in the waiting room, we caught sight of our favourite consultant. ‘I shan’t be long,’ she mouthed to us, as she ushered another patient into a side-room.
‘Is that good?’ asked P.
‘I think it’s going to be okay,’ I lied.
‘Lisa Lynch,’ announced a nurse, at which we leapt straight out of the seats that had barely touched our arses. ‘Sorry about all the waiting today,’ she said, as we followed her into a room around the corner. (A crying room?) ‘If you just grab a seat here, someone will be along shortly.’
‘Someone?’ asked a concerned P. Did ‘someone’ mean someone other than our favourite consultant? Or did it mean someone plus our favourite consultant?
‘I hope it’s just her. It really needs to be just her. It’s got to be just her.’ I repeated it like a mantra. ‘No, it really must be just… shit, I need the loo again,’ I huffed, carelessly slinging my bag into P’s lap and storming out of the room.

By the time I came back (there was a queue – of course there was a queue), the door to our room was open and P was in tears. Before there was even a split second to ask why, Favourite Consultant was ushering me back into my seat with words that P cheerfully nicked right from her mouth: ‘Everything’s okay!’

And that, in a nutshell, is why she’s our favourite consultant. Not because she then revealed the news that my disease hasn’t progressed; not because she told us that there’s no nerve damage to my spine; not even because she grinned as she explained that not only has the spread of my brain tumour halted, but that it even appears to be a bit smaller than at last look (a teeeeny tiiiiiny bit, like, but still: smaller!). No, she’s our favourite consultant because she completely understands not just The Bullshit, but the bullshit that comes with The Bullshit – like the waiting and the nervousness and the heartache. Which is why, when I saw my chance to block another loo, she saw her chance to put a husband out of his misery, popping her head around the door to say ‘don’t worry; it’s good news’.

I doubt they know how to teach that kind of compassion in medical school; I guess it’s just something you’ve got or you haven’t. But Favourite Consultant hasn’t just got it; she is it. At every stage of the grade-four process, she’s been the one with all the shit stuff to deal with: telling us that the first type of chemo wasn’t working; revealing the awful news of the brain tumour; having to be the one who gave us the months-and-not-years talk. And given that most of the occasions on which we’ve seen her have been miserable ones, you might’ve expected us to have come away sticking pins in a Frightening Consultant voodoo doll. Far from hating her guts, though, we’ve instead fallen a bit in love with her (okay, a lot in love with her), simply because she’s human; because she gets it; because she gets us. The loo-break instance is example enough, but when you add to that the hugs she gave us the first time my blood results revealed good things, the tears in her eyes as she held our hands during that talk, the pre-new-year phonecall she made to tell us that my tumour-marker levels had gone down, and the speed at which she’ll demand the return of test results to save us from the waiting-horrors above… well, you’d fall in love with her too.  

And so, as we left the hospital with relieved tears freezing on our cheeks, we felt as chuffed for Favourite Consultant as we were for ourselves. What’s more, we knew she’d appreciate – and never judge us for – our joyously unconcealed celebration of what, essentially, is a maintenance of the status quo. It’s odd rejoicing the fact that nothing’s changed, but that, alas, is just another of The Bullshit’s twisted rules: no news isn’t good news… but, when you’re in these shoes, no change definitely is.

It’s not that what we heard yesterday isn’t good news (because, by ’eck, it’s the best news since my nephew was born); it’s simply that our definition of good news has had to change. To the uninitiated, then, good news might perhaps be the total disappearance of my tumours. But, alas, that’s neither realistic nor possible. What is possible, however – if treatment does its thing – is halting in its tracks the cancer that was spreading uncontrollably, damaging whatever it could in the process. That damage is now done – and can’t be undone. What can be done, though, is ripping out The Bullshit’s engine and keeping it from doing any more damage for as long as we possibly can. And since that’s exactly what’s happened, there is thankfully only one conclusion to make. So no hidden meanings, secret significances or sinister conspiracies here – just three little words that were well worth the wait: treatment is working.