Tuesday, 4 October 2011

Question time.

If I have a talent for anything, I like to think that it’s rapping my way with words. But, to my mind, not even the most gifted of scribes could find an easy way to tell people that they have incurable cancer. Nor is there an easy way to know what to say in return. And so what comes in response is, for the most part, a barrage of questions. How did this happen? How was it allowed to happen? How did you suspect something was wrong? How was it discovered? How are you feeling physically? How are you dealing with it emotionally? How will this be managed? How long are you looking at? Just, y’know… how?

Hence, in all the messages I’ve been sent since the revelation of The Bullshit’s sinister return, very few have avoided including some kind of ‘how’; some kind of puzzlement; some kind of furious question; some kind of fist-shaking interrogation of the universe. And rightly so. Because, really, what do you say when your friend/colleague/family member tells you that? What is there to say other than ‘fuck’ and ‘sorry’ and ‘how did this happen?’ (Were I of a mind to be writing a different kind of post today, I’d be recalling one example of particular note in which none of those things were said and, in fact, no reference at all was made to the news I’d painfully revealed in my prior message – because, of course, my incurable cancer is far less important than such trivialities as the name of someone’s new dog.  I can only hope and assume that my email was never actually read, lest I realise what a terrible judgement of friendship I once made.)

And yet, despite my so-called talent for writing, I still haven’t found the words or the might or the answers to appropriately respond to the many questions in the many kind messages that remain unanswered in my email inbox (or voicemail or texts or Twitter stream or Facebook page). So this post, then, is for the benefit of anyone who’s asked. And, to be perfectly honest, it’s for my benefit too. Because, as I discovered the first time the word ‘cancer’ was said to me in that way, I often just don’t know the answer to how I’m feeling until I’ve written it down.

But first, a story. As you may have read in the Tupperware post several weeks ago, a series of panic attacks that began around July time (coinciding with the heightened pain in my back) eventually brought me to the conclusion that it was time to go back to therapy. And so, an appointment was made for the end of September: an appointment which, I assumed, would set me back on the track marked ‘coping’ with its clever survival strategies and mantras of reasonable thought. But in the meantime, of course, The Bullshit reappeared in the most spectacularly terrifying way, proving me right about all the worry and panic and rather altering my need for therapy in the first place. But hey, the appointment was there, and I was damn well going to use it – no, we were damn well going to use it. And so P and I duly turned up, tissues tucked into one palm, each other’s spare hand tucked into the other.

Given that, since the last time I saw Mr Marbles, I’ve published a book in which I comment inappropriately cutely on his corduroy slacks, I thought best to find a therapist this time who knew nothing about The C-Word: hence I – we – are now seeing Mrs Marbles: a young, spunky alternative to Mr Marbles with patent pumps, kids’ drawings on the walls and man-sized tissues on the table; the Holly Willoughby to his Phillip Schofield, if you will. We went through the usual introductory pleasantries: my health history, our families, how long we’d been married, our jobs…
‘And you, Lisa?’
‘I’m a writer.’
‘Great, good.’
‘Which, I should say, has largely been my way of coping.’
‘That’s a good tactic.’
‘Well, we both like to have things out in the open; it’s important that we face things head-on,’ I said, such clichés doubtless leading her to believe that I am a writer of the truly terrible sort.
‘You genuinely want to face this thing down?’ she asked.
‘Exactly. We know it’s hard, but it’s the only way we can deal with it.’
‘I think that’s brilliant. I mean, some people can’t even say the c-word, can they? Speaking of which, have you read that book? Because I really think…’
‘Oh,’ I said, turning to P and blushing.
‘You have?’ she asked.
‘Erm, it’s my book.’
She looked down at her notes, up at me, and down at her notes again. ‘Of course! You’re Lisa Lynch!’
‘Ha, yeah.’
‘Well it’s very nice to meet you… to meet you both,’ she added, giving P a look that said ‘crikey, so you’re the incredible man I’ve read about’. I grabbed his hand a little tighter, my daft way of hanging an imaginary ‘MINE’ sign around his neck. Mrs M was awfully kind about my book, saying how many of her patients talk about it, and how they say it’s helped them. I can never take that stuff on board, so I shuffled my way past it as best I could, moving swiftly onto the Bigger Issues. It goes some way to describing how uncomfortable I am with a compliment, I think, that I’d rather discuss my concern about how P will cope once I’ve gone than talk about the benefits of some daft thing I’ve written.

But hey, even I have to admit that having your own book recommended to you by your new therapist is rather on the cool side. And, given the dearth of situations in which we’ve been able to find laughter lately (alas, no funny nipple stories to be had where terminal cancer is concerned), it was a welcome change from a mood that’s mostly been pure grey. But, anyway, back to the hows.

‘I know I’m an idiot,’ said Busby: my lovely mate who is categorically anything but, ‘But I haven’t been able to work out why you were admitted to hospital straight after the diagnosis? I mean, did the worst of the pain start only once you’d been told?’
I scrunched up my nose as she perched on the edge of my bed, my cop-out signal of the stuff I hadn’t been telling her over the previous few weeks.
‘Oh… so it’d been really painful for a while?’ she said.
I nodded.
‘And you’d been keeping it quiet…?’
I nodded again.

This, I suspect, has been one of the bigger unanswered questions, and with good reason. Because, annoyingly, it’s just not as simple as last time. Last time there was a lump in my boob, a GP appointment, a biopsy, all that stuff. This time, though? Well it’s all a big bloody mess – made even messier by the back-break. (If, indeed, it wasn’t the back-break that messed everything up in the first place.) You see, since breaking my back some 16 months ago I have, of course, felt a certain amount of pain. And yes, it got a lot better – but then some days it’s been, for seemingly no reason whatsoever, a lot worse. So it’s been impossible to distinguish between back-break pain and anything more sinister. Hence, the only signals I had that something was seriously wrong were when a) it very suddenly began to get worse this July, b) the Tupperware-bump hurt my skull way more than it ought to have and c) I started to develop pain in my shoulders and clavicles. And so, of course, I took it all to the GP (which is to say, I took it to the GP several times, and also to A&E), who eventually referred it to x-ray, who then sent it back with a stamp saying ‘cancer’.

In the meantime, my pain was getting worse by the hour. So much worse, in fact, that by the afternoon of my initial diagnosis, I found myself in Smiley Surgeon’s clinic (for he was the only person who’d see me at such short notice) being loaded into an ambulance and packed off to the Royal Marsden, from where I eventually broke the news.

Since then, the hows have been equally – and frustratingly ­– difficult to answer; and yet they still come thick and fast. Because in the seemingly innocuous ‘how are you feeling’, for example, there are endless answers. First, the physical: I’m feeling sick, constantly. I’m being sick, often. I feel the way I do when I’m sitting on a bus and attempt to do anything (looking at my phone, listening to music, reading a book, having a conversation) only to end up with motion sickness; I feel like that all the time. Even writing makes me feel sick; a fact which makes me feel even sicker. I’m light-headed. I’m constipated. I’m tired. So tired. I can’t walk very far. I can’t talk very much. I can’t get a grip on what day it is. I’m often in pain. And yes, the pain is under control thanks to all the morphine – but that, coupled with the chemo, is probably what’s contributing to all the sickness in the first place.

And so to the emotional: I’m angry. I’m very, very angry. I’m angry at being a patient – I HATE being a patient – and I’m angry that I can’t do much for myself. I’m angry that I can’t be left on my own and I’m angry that we’re all back here again… and that being ‘back here’ is so much worse. I appreciate that it’s going to take several weeks before we can ascertain what my quality of life will look like, but all this waiting and hanging on and putting up with things in the meantime leaves me with little hope – sometimes no hope at all. I simply cannot abide what this is doing to the people I love, and I further cannot abide my reaction to it. I should be easier on them, providing a shoulder of strength for their palpable heartbreak – not getting frustrated and feeling hard done by and getting even angrier. Because what are they supposed to do? They are, after all, already grieving me – even though I’m still here. They’re hopelessly upset at their inability to do anything to help. And yet all I want from them is a triviality; a joke; a snippet of normal conversation that will rescue me from the feeling that I’ve lost my life already. Because right now, that’s how it feels. This mystical ‘quality of life’ for which everyone is striving – where the hell is it now?

But also, I’m angry that I can’t answer all of the questions. I’m angry that there are so many questions in the first place, yes, but I’m even angrier that I can’t find a better way of answering them than this. I wish it were as easy as being able to give people a diagnosis less woolly than ‘it’s in my bones – all of them’, and packing them off with a fact sheet, as I did in my initial post. But actually, that stuff sort of doesn’t matter any more. Because we’re not coming to terms with cancer; we’re coming to terms with death. And yes, that death may be a long, long way off yet – and despite all of the above, I hope with every inch of my being that it is… heck, we might all find ourselves fifteen years down the line with you guys tapping your watches at me – but in the meantime, all that appears to remain is a bloody great question to which, quite simply, I have no answer.