Yeah, okay, there were moments. Moments like the Friday before Christmas when, after a long car journey and a tiredness that subsequently hit me like an asteroid, I was on far from the form I’d have like to have been for visiting family and friends. (Ruddy frustrating, given that earlier in the day I’d made the fate-tempting mistake of cockily pronouncing that I felt better than I had in months.) And then, a few days later, there was the weepy moment that preceded getting in the car to head back down to London; not just a difficult moment for me, but difficult for my parents too. None of us needed to overtly reveal our ‘but-what-if-this-is-our-last-Christmas-together?’ thoughts to one another (between family, that kind of thing is not just implicitly understood but wholly unnecessary to voice) but, bugger me, it hurt.
Those moments, however, were mere bookends either side of a genuinely wonderful Christmas: in fact, along with last year’s festivities at Jamie and Leanne’s new house, it was among my two favourite ever Christmases, simply because nothing about it felt different or unusual; everything was done to the Family Mac’s accustomed running order – with one fantastic, Corey-shaped addition.
There was the morning opening of stockings and the subsequent Terry’s Chocolate Orange breakfast. There was the beautiful moment when we watched Leanne trot excitedly past my parents’ front window, cradling my Santa-Claus-outfit-clad nephew (well, what are aunties for, eh?), then being able to greedily seize the quota of Corey-cuddles I’ve so missed over the last few weeks. There was the customary organised chaos of present-opening with all seven of us (if you can find better – or, for that matter, more ludicrously generous – gift-buyers than the Macs, I’d like to meet them). There was the best turkey dinner I’ve ever eaten, as nailed by Mum and P. There was their teasingly bickering preparation of which that provided far better entertainment for a sofa-settled me and Dad than anything the telly could provide. There was the glorious post-dinner nap sandwiched between P and a brand new, so-adorable-I’m-not-embarrassed-to-admit-it (despite-being-thirty-ruddy-two) teddy bear. And there was the pre-bedtime board game of customised Monopoly – Lisopoly, no less – courtesy of my cousins (and, it seems, a lorra help from my mates: see Community Chest instructions including ‘You’ve won two tickets to a Michael Bublé concert – pay £50 to get someone to take them off your hands’ and ‘A reader spots a grammatical error on your blog – pay a £20 fine and hang your head in shame’). All in all, then, a pretty bloody lovely family Christmas.
It’s getting boring, this, isn’t it? All this incessant wow-my-family-are-amazing stuff? I know, I know, you must be proper sick of hearing it. And I’m sorry. But, daft and nullifying as it may sound, I’m equally as sorry as I am unapologetic. Because, see, my family are amazing. They’re shout-from-the-rooftops amazing; wish-you-were-more-like-them amazing; I’m-so-bloody-lucky-they’re-mine-that-it-makes-the-shit-luck-on-the-cancer-front-feel-not-in-the-least-bit-disproportionate amazing. But, for the purpose of balance, it’s only fair I reveal that they’re not the only ones who’ve made mine and P’s Christmases this year. Because, actually, busily squirreling away behind the scenes like astoundingly efficient elves, have been another amazing group of people: the staff at Trinity Hospice.
In light of their quite indispensable assistance since my secondary diagnosis (which I’ve both mentioned before and urge you to read about again by clicking here), P and I chose not to send Christmas cards this year, instead donating what we would otherwise have spent on cards and postage to them. My parents did the same too and, as a result of each of our emails explaining the decision to those on our Christmas-card lists, between us – and many generous friends – we raised the gift of a donation of almost £500 towards Trinity’s vital care, whether that be home visits, day services or in-patient treatment. (And if you fancy adding to those coffers, I appeal of to you to hit this link.)
The Christmas gifts that P and I found ourselves very unexpectedly receiving from Trinity, however (not, I hasten to add, in response to the above, but out of sheer kind-heartedness) came not as just a welcome and truly touching surprise, but served as further confirmation of the downright ruddy tenacious wonderfulness of the centre’s staff – in particular mine and P’s favourite, er, trinity of three particularly special employees. Which means that now, of course, you’ve got me banging on about the amazingness of this little lot instead of the amazingness of my family. But, by ’eck, it’s nowt less than they deserve.
From our initial introduction, everyone at the majestic, almost Dickensian premises of Trinity Hospice has been hugely welcoming to us, so much in fact that they practically burst into a rendition of Consider Yourself upon our first visit. Which given that, until days prior, neither P nor I had heard of them – despite their charity shops all over London, their enormous building on Clapham Common and the fact that they’re a well-supported service without whom hundreds of people’s lives wouldn’t be half as easy to manage – was quite a turn up for the books. The thing is, though, P and I are in our thirties… so why should we have heard of them? Like the idea of secondary cancer before The Bullshit muscled into our lives, it was just another of those things that wasn’t remotely on our radar. And, equally daft and nullifying as my statement above, both too bloody right and why the bejeezus not? Because, actually, as much as I felt physically sick upon being referred to a – shudder – palliative care team (to the point where seeing those words in my notes and hospital letters still prompts one of the brain-tumour-gifted squiggly light-flashes that I often get in front of my eyes; the kind of which you might find yourself getting before a migraine), in fact, the truth behind Trinity Hospice is not just about providing people in need with a proper place to meet their ends, but instead – as their mission statement affirms – about living every moment in the meantime.
I feel a duty, then – particularly as a thirtysomething under the community care of a hospice – to quash some of the common preconceptions about what hospices are actually for; about what they actually do for those of us who have come to rely upon them. Because, yes, for plenty of folk under their in-patient care, their facilities are about having somewhere peaceful – and, more importantly, prepared – in which to die. But, equally, for all manner of others, that side of things will, hopefully, be a long way off. Like me, for instance. Yes, I’m being cared for by a hospice… but I’m not even close to taking my last breath just yet, ta very much. And yes, Trinity is the kind of place in which I’d be perfectly happy to receive respite care where necessary… but again, I hope I won’t be needing that just yet either. So for now, then, it’s more of a place – a comfortable, understanding, responsible place – in which I’ll have access to physiotherapy or massage or reflexology or art therapy. (Despite Dad’s piss-taking reaction to the latter being ‘Ha! You? Art therapy? And what are you going to draw, a stick man with a “go fuck yourself” speech bubble?’) But, obviously, there’s far more to it all than that. There’s the (cue holy trinity) regular visits from my designated nurse, the emotional support from my counsellor, and the administrative assistance from a planner so damn organised that without whom we wouldn’t have heard about half – heck, any – of the blue-badge/DLA/ESA-shaped assistance available to us.
Imagine our uninhibitedly impressed reaction, then, when – in addition to all of the above – we received a call from Trinity Hospice a few days before Christmas to tell us that, after they’d received a (perfectly understandable) refusal for a MacMillan grant they’d applied for in the hope of treating us to a special evening for our wedding anniversary, our favourite superstaff had turned their disappointment at said knock-back into pure kick-ass, thoughtfully bagging a bunch of donated delights in order for us to have lovely things for us to look forward to in the new year. And boy, what a veritable Santa’s sack: a night in a swanky hotel, a lovely dinner, theatre tickets, a mani/pedi… talk about coming up trumps. And all stuff which – believe me – to a couple very tentatively peering around the corner of 2012, makes a helluva big difference.
The thing is, of course, we’re perfectly capable of arranging these kind of things ourselves. And we’re perfectly capable of paying for them, too – heck, we’d be happy to. But, as you might expect, organising treats for ourselves isn’t exactly on our list of priorities right now, not least with the added hassle of fitting in stuff around chemo dates and surgery dates and hopefully-feeling-well-enough dates, and then planning stuff with wheelchair access where necessary; stuff that can be cancelled at late notice if I’m not fit enough and all that blah… And so, having other people put thought and time and effort into doing that for us so kindly and unexpectedly and of their own volition – well, sheesh. There are no words.
As anyone with an illness like The Bullshit will tell you, upon it crash-landing into your world, you suddenly become aware of charities you’d perhaps never otherwise have paid much attention to. And while, in my case at least, my first ports of call – in a horrified, how-on-earth-could-this-possibly-have-happened-to-me mindset – were to the more research and awareness-centred organisations, since I discovered the incurable nature of my disease, my eyes have been opened to new kinds of charities; charities which exist simply to provide nice experiences for folk in this kind of position. That’s not my way of saying that research and awareness are of little use to me now (because frankly, sod me, click here and marvel at the wealth of information on offer… and when you’re done with that, click here too and learn how to check your norks) that’s my way of saying that, actually, both kinds of charity are as useful and worthwhile as the other.
But then, as I’ve admitted before, there’s still that niggling little part inside of me that can’t help but find it difficult to accept this kind of help: the kind of help that doesn’t treat or support or counsel; the kind of help that simply goes towards creating pleasant, meaningful memories during a time that can otherwise seem pretty bloody bleak. It makes you feel a bit ‘all-right-but-where’s-the-catch?’; a bit like the kind of poor sod one might accuse of being a Jeremy Kyle Show producer’s wet dream. You know what I mean, right? The sort of ill-fated folk who appear on Noel’s Christmas Presents or Text Santa or Little Britain sketches with David Soul beside a sick child’s hospital bed. Because that’s just the way we are, isn’t it? It’s what we do. We feel bad accepting help; embarrassed, even. Particularly so when it’s in receipt of something we hadn’t even asked for. It’s just terribly, indefensibly, bloody British.
And so, for that utterly unnecessary, insultingly inappropriate, completely chuffing wide of the mark moment in which you feel like one of those people, it is awfully, awfully sad to look upon yourself as a charity case; some sort of chancer getting something for nothing. But then, of course, you suddenly remember that, in fact, there is a catch; you are, in fact, one of those poor sods. Because you’re 32 and you’re having palliative care. You’re 32 and you’ve got an illness that can’t be cured. You’re 32 and you’re a ticking fucking timebomb. And very rapidly, in a lightning-flash of sanity, that embarrassment and Britishness and unease immediately evaporates. Because, actually, screw it – of course you ruddy well deserve this kind of stuff… just as you deserve the treatment, and the information, and the happier moments, and everything you unwrapped on Christmas morning.
But as wonderful as all my Christmas gifts were – and in that I include the fancy pyjamas and the nail varnish and the Trinity-gifted new-year treats every bit as much as the invaluable time spent in Derby with both the Mac and Lynch mobs – we received an additional gift yesterday afternoon that trumped them all: a call from my new favourite consultant at the Royal Marsden, about whom I think it’s time I posted in more detail, so watch this space for another puke-maker of a girl-crushing gush-fest.
‘Hi, Lisa. There’s nothing to worry about,’ she said as soon as I picked up the receiver, ‘I just wanted to call you with some good news.’
(I doubt I’ll ever get over being under the care of a hospital who seem to care about the success of my medical care every bit as much as we do; the kind of hospital whose head oncologist has been known to call me on a Friday evening just to check how I’m doing. It makes us quite sincerely want my treatment to work for them every bit as we want it to work for us. And it’s the reason why I, along with my closest family and friends, have signed up to participate in the Marsden March for the Royal Marsden Cancer Charity in a couple of months’ time, walking – or, in my case, wheeling – a 14-mile course between their hospitals in Chelsea and Sutton. Our combined target is a rather ambitious £5,000 – and yes, I know it’s a cash-strapped time of year, and I’ve already directed you to donations for Trinity Hospice, but if you can find anything to help us reach our goal, we’d be forever grateful if you’d visit this link to do so. And if you needed any further rationale than the incredible care I’ve been given so far, how’s about reading on for a total corker of a reason…)
‘I was keen to let you know about the results of yesterday’s blood test,’ continued my new favourite consultant.
‘Oh…?’ I asked, expectantly.
‘It’s your tumour marker: it’s come down again… and not just by a tiny bit like last time,’ she revealed, ‘but actually to the level it was at back in September.’
‘That’s incredible news!’ I squealed, as P punched the air in bed beside me. ‘Thank you so much for letting me know!’
‘No problem whatsoever,’ she said. ‘I know when we spoke yesterday you were worried about the increase in your headaches lately, so I just wanted to give you some reassurance before your MRI at the end of next month. Because, along with that and the management of your pain, this is the most encouraging sign we’ve had yet that things are under control.’
‘That’s just amazing. Amazing. So amazing,’ I spluttered, losing the use of my ability to vary adjectives.
‘But also, my love, I just wanted to make sure that you had a happy new year,’ she said so kindly, immediately cementing that very wish.
So, yes. Happy new year indeed. And, more’s the point, here’s to the next one. Because despite the loveliness of it; despite the generosity of it; despite even the sadder moments of it, me and my team are going to do everything humanly possible – be it through treatment, support, or simply happy experiences – to make sure there’s no sodding way this festive season will have been my last.