Rest Day

I am tired.  Very tired.  Not quite exhausted.  It’s the kind of generalised tiredness that has no particular rhyme, reason or obvious source.  I’m just a bit done in.  We’re not talking about the debilitating, all consuming fatigue that featured over chemo or that kind of groggy morphine induced stupor that I felt after surgery.  This a residual tiredness.  Ok – there are ways in which this version of tired is distinguishable:  The legs ache a bit, my breathing is a little laboured and my sluggish brain can’t get out of second gear, no matter how much coffee I pour down my throat.  If I had to, I could get up and out to do all sorts of things – but  for once I’m glad I don’t and, for today at least, I’m going to stay firmly rooted to the couch.

‘I’m tired too.  Try having a [full time job/young family/deadline/training plan/intensive skin care routine]’ I can imagine people thinking.  And absolutely – being tired is a fact of life.  In the ‘before times’ I’d spend weeks, maybe months on end in a state of near exhaustion and think nothing of it.  It’s what happens when you have one and a half full time jobs, put in 100k plus training weeks and fill your life to the point that you struggle find a spare hour a week to watch TV.  It’s probable that if I were obliged to do something today, I’d be fine – I’ve not exactly forgotten how to turn up and get to work.  That’s just as well because (once the admin delays have cleared) I’m imminently due to go back to the day job, albeit on a very cautiously planned phased return.  If today were the day, I’d be delighted to be back – I’ve missed it.

So I suppose I’m fine, really.  After all, I’ve been pretty active recently and have spent the past few weeks building the running back up, as well as busying myself with rehearsals and gigs etc.  Sleep is still an issue and I’m spending about three hours awake in the small hours before eventually dozing again and perhaps surfacing by the time the Today Programme is drawing to a close.  It’s gotten to the point that I left a rehearsal early on Monday and struggled to get through yesterday’s run.  Perhaps it’s not so surprising that all this has caught up with me.

But when you have cancer, nothing is straightforward.  One of the most often mentioned indications of a resurgence of the disease is the fatigue.  I’ve been told to look out for it recently, in addition to unexplained weight loss.  What if the cancer is taking hold again?  I’ve become pretty good at listening to my body – what if today is not just my body imploring me to rest, but a bright red flag being brandished in my face?!  The latest scan results don’t really provide me with any clues here.  Given I’m not undergoing any treatment to shrink the remaining tumours, it’s no surprise the liver cancer has grown,  but as that’s from 15 to 21mm and therefore not yet concerning, there’s still a good chance that chemo can hold off until Autumn.  This means I can now dare to hope for an enjoyable summer and to set up my award winning music department for the new school year before life becomes really difficult again.

This might not sound like much to aim for, but hopes and dreams have fluctuated so much recently.  I’ve decided to give up thinking and planning in six week blocks from test to scan to test to appointment – the uncertainty has driven me mad.  So I’m going to imagine doing things a little further in advance and – well – if the time comes and I’m unable to keep my promises, then I apologise in advance – all I can do is give my best and that will have to do.  I’m aware that I’ve got quite a bit of leeway with this in all directions, but I’m loathed to use it.  I’m not exactly afraid of ‘playing the cancer card’ but I’d rather save that for when I really need to.

It also feels increasingly like I have a responsibility to be a ‘good’ cancer patient.  It’s in my nature anyway, but there’s a kind of pressure to turn up when I can and show everyone I’m still up for the fight. That I’m staring cancer in the face, not giving in, that I can still do everything I used to and I’m certainly not tired when there’s nothing going on to make me tired.  After all, there’s been no treatment for five months!  Being called inspirational on a regular basis is both uplifting and humbling and as recently as last night, complete strangers have come up to me and said that they appreciate, for example, this blog.  Well it’s hardly inspiring to just sit on the sofa watching cricket, whatever my body is telling me.

The Scamanda podcast hasn’t helped.  Given the title, I don’t consider it a spoiler to reveal that it tells the true story of an American woman who faked having cancer for eight years.  In this time, she obtained over $100,000 in donations plus all sorts of freebies and kind gestures from those around her.  At this point, let me assure everyone that I really do have cancer and you’re welcome to look at my latest histology report!  But still, I feel like a fraud at the best of times.  What if, knowing that this has happened, people suspect this of me and think I’m putting on a show in order get a sick note and a load of sympathy.  Soon, when I start work on fundraising for charity, are people going to look at this suspiciously and cynically ask what’s in it for me?  Maybe I should  always keep a copy of my medical records in my back pocket just in case!

Ok – that last paragraph is irrational, but I’m getting a real sense that people have gotten over the initial shock and are tiring of this whole cancer saga.  It’s dragging on a bit and nothing’s really happened in the past few episodes. Is this the ‘disappointing’ third season?  It’s not like I’ve yet been served the ‘terminal papers’ that predict less than a year – things appear to be moving more slowly than that.  Everyone can get on with their lives for a bit, safe in the knowledge they probably won’t have to drop everything to see me one last time, at least for the time being.  It’s also becoming quite clear that my attitude to living with cancer isn’t so extraordinary.  I could point you to examples of people who have continued working, running, being creative, fundraising and living every single day far more inspirationally than I am.

And it’s not like I’ve suddenly become some kind of veteran sage uttering unto society a meaningful and profound brand of truth.  It feels like I’m suddenly twenty years older but I’m hardly twenty years wiser and certainly don’t hold any secrets to a long and prosperous life – quite the opposite! I still have my fair share of rubbish ideas strewn amongst a few that may or may not be gaining traction.  It took a group of fellow cancer patients to bring this home the other day when they pointed out the obvious flaw in one hopeful plan to get people talking about cancer through some kind of panel discussion, as charities sometimes put on. ‘Who on earth is going to come to hear people talking about cancer?’ Is an obvious question here but not one posed to me by anyone else.  Perhaps I need more people saying ‘no’ or making me think again.  It’s ok – it won’t crush me to be told why an idea won’t work or something I want is out of reach.  I think I’m starting to value honesty over kindness.  I’d prefer to know exactly where I stand. Honestly.

Maybe I’m not just tired today but also grumpy!  It’s not easy to be chipper when you’re tired and the Australian batsmen are annoyingly digging in to some buffet bowling.  I’m not great at rest days anyway, no matter how much my body needs one.  The personal quality of being able to keep putting one foot in front of the other becomes an annoyance when you’re trying to work out how to get through a day aiming not to.  I’m also a massive hypocrite.  I’d encourage anyone else – cancered or not – to sit back and enjoy such a day of rest because if they need it this much, chances are they’ve earned it.  But it’s harder to convince myself of that.  Perhaps this is literally what it’s like to live a day as if your last.  Nothing really happens and the fact that it’s a bit boring really doesn’t matter.

And on that most joyously positive note, I’ll be back in a few days with more inspirational words of wisdom…
You’re welcome.

    Leave a Reply

    Your email address will not be published. Required fields are marked *

    Thanks for submitting your comment!