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.