Thursday 2 December 2010

Mind the gap.

The older I’ve got, the more I’ve realised – and become immensely proud of – how clever my mates are. I’ve got mates on national newspapers and magazines, mates in important marketing and PR roles, mates in medicine, mates in the city, mates running their own businesses, mates running other people’s businesses… put it this way, if I were going on Who Wants To Be A Millionaire, I wouldn’t be short of a reliable phone-a-friend. (Speaking of which, I’ve even got a mate who’s been on Who Wants To Be A Millionaire. Twice.)

Perhaps the cleverest of all my mates, though, is Si: a mate so clever I’ve never really understood what it was he did. I’ve always known that it was something in the smartarse category but, frankly, I was never clever enough to realise how clever his clever job was. (I’m having one of those isn’t-clever-a-funny-word moments, where you stare at a simple phrase for an eternity, convincing yourself that ‘shoe’ or ‘get’ or ‘is’ can’t possibly be spelled that way. Good job I’ve got clever friends, eh?) You see, Si – sorry, Dr Si – is a medical anthropologist. And not just any medical anthropologist (because, of course, medical anthropologists are ten-a-penny), but a senior lecturer at Cambridge, too.

Si’s not always clever though, as he demonstrated last week when he made the definitely-not-clever move of asking me to speak in one of his lectures. But before you assume I was some kind of fancypants guest-lecturer (ha, come on – what did you think I was going to speak about, The Science of Fancying Gary Over Robbie? A History of Rovers Return Barmaids?), I was instead to be that week’s featured patient in a term on the social context of health and illness, as presented to 250-odd first-year medical students.

While it was my job simply to tell the story of my Bullshit (I referred to it as ‘The Bullshit’, of course – these kids need to know the correct medical terminology, after all), what Si was speaking about was the limits of medicine – or, in other (non-clever) words, the parts that medical professionals just can’t reach.

Now, aside from Clever Dr Si being a speaker so brilliant that I felt like a front-row groupie, this subject was of particular interest to me, following a few recent conversations with Always-Right Cancer Nurse that have, to be perfectly honest, kept me awake at night. Before anyone gets protective and jumps to shield my honour in the comments – because that is categorically not my intention here – I’ll preface the following dialogue by saying, as I’ve stated a million times previously, that I ADORE Always-Right Cancer Nurse. She’s amazing at her job and great fun to be around and marvellously empathetic and, frankly, I have a bit of a girl-crush on her. But, after a hitherto un-blogged conversation we had around the time of my last surgery (and have since repeated on more than one occasion), I’ve been forced to confront the Santa-doesn’t-exist realisation that Always-Right Cancer Nurse – deep breath – isn’t always right.

‘So,’ she said on the morning of my surgery, bounding up to my hospital bed around which my family were gathered, ‘it’s been so long that I haven’t even seen you to talk about your book!’
‘Ah, of course – so you’ve read it?’ I asked.
‘I have, and it’s really impressive.’
‘Ah, thanks,’ I said.
‘I have to admit, though,’ she said tentatively, ‘I found it to be quite a depressive read.’ (Down the side of my eye I caught my old man preparing to put her right in the way only a Dad can.) ‘It’s very angry.’
‘That’s a fair point,’ I admitted. I couldn’t argue with that, really. I mean, while it was never exactly my intention with my book (and is, at the same time, difficult for me to judge), I expect that The C-Word can probably be as angry as it is daft.
But then came the clincher: ‘I hadn’t realised that you hadn’t coped.’ Now that was something I could argue with.
‘Whoa whoa whoa,’ I protested, ‘I coped really well, actually. Being angry or feeling depressed doesn’t mean you’re not coping. It’s part of coping. I coped just fine, thank you.’ (Dad’s I’ll-put-you-straight look now had more of a you-tell-em-Lis air.)
‘Oh okay,’ she conceded. ‘I’m sure you did. I suppose I meant chemo. I hadn’t realised you hadn’t coped with that part.’
‘But I did cope with it!’ I squealed, getting redder with every syllable. ‘I mean, shit, it was a living hell, but I coped with it!’
‘I’d just never realised how it had been for you,’ she said, as I suddenly twigged that her perspective wasn’t borne out of disparagement, but of hurt at me keeping from her such an enormous part of my experience when I’d been so open about everything else. ‘I’d always imagined it hadn’t been as bad as you’d expected it to be. I mean, lots of women we see deal with it fine.’

This wasn’t the first time I’d heard the some-people-are-fine-with-it argument. A mate of P’s once asked me about how I’d felt during chemo, then met my answer with: ‘Oh. Because in his book, Geoff Boycott said it wasn’t that bad.’ (I’ve just deleted an unnecessarily lengthy paragraph of an I’d-like-to-see-Geoff-Boycott-try-my-chemo nature from this part of the post. Because, sheesh – it’s completely fucking ridiculous that I should even have to consider defending the nuclear attack that was my experience of chemotherapy, let alone subject you to it.)

‘Well those women clearly aren’t having FEC/T,’ I said to Always-Right Cancer Nurse. ‘And certainly not at the volumes I had it. I can’t tell you how many consent forms I had to sign before they’d go ahead with it – that’s how intensive my dosage was.’
Dad took this as his cue to defend his daughter. ‘Actually,’ he said, ‘my sister has just had the same type of chemo – and not, as far as I know, in the same volumes – and she’s had every bit as much of a horrendous time with it as Lisa had. Her symptoms were exactly the same as Lisa’s. Almost to the day.’
‘Oh,’ said ARCN, visibly shocked that such a key part of the process so often goes unspoken. ‘But you see, nobody ever tells us about that.’

And therein lies the problem. (May I, at this point, briefly refer you back to this post? Yup… we knew this was coming, right?) I can’t speak on behalf of other patients but, with regards to my own experience, the fault here is, of course, mostly mine. See, I went to great efforts to hide my torturous time with chemo from Always-Right Cancer Nurse and Smiley Surgeon and everyone else at that particular clinic, for a number of reasons. Firstly because the days when I visited them were always my ‘better days’ on which I had the energy to paint on some make-up and a smile, style up my wig, and wear something other than pyjamas. And so, on the two days out of 21 when you’re suddenly feeling more like a human being, the very last thing you want to do is talk about the zombified state from which you’ve just been released. And so you shrug it off with a ‘well I’m alright now’ and a ‘let’s get on with the next one’ and nobody’s any the wiser.

Another reason was that, in my infinite arse-licky quest to be their favourite patient, I only ever wanted to paint some ludicrously overstated picture of myself as the kind of spritely young smiler with a grin that not even chemo could dent. But, as we now know, that was never going to be an act I could sustain forever. (Actually, I suppose, you could extend that excuse even further. Because, in actual fact, I didn’t really talk about the chemo stuff with anybody face-to-face. My blog was my way of talking about it; and once the shitty stuff had been posted online, I saw no reason to articulate it any further. I’d said it; it was out there; and anyone who was really interested in what was going on simply had to look here for the answers I’d rather not have given in person.) But without the benefit – or, perhaps, hindrance – of being able to read my blog (because I didn’t tell them about that either) there remains a cavernous divide between what my medical team thought they knew and how much of the reality they actually understood.

But what about the gap in between? Well that, I suppose, is a prime example of the limits of medicine that Clever Dr Si was speaking about. See, as much as my doctors are perfectly aware of the list of possible side effects of chemotherapy (to use that as an example), what they can’t know is exactly what those symptoms feel like – just as I can’t know what it’s like to cut open a breast or biopsy suspicious tissue or administer life-saving drugs. And so as close as you can be – as close as I still am – to your medical team, there’ll always be a wall of unawareness between you, like being married to a Spook or being mates with a James Blunt fan.

And thus what I desperately wanted to plead of Cambridge’s first year medical students (aside from not to judge me on my tendency to squeeze more and-errs into a sentence than the entire Manchester United squad) was for them to not just pay diligent attention to the more scientific parts of their course, but to become better doctors by understanding the experience of their patients in a way that, I think, our information age will eventually come to expect. Not that I spelled that out to the students in the lecture theatre, mind you. Nah, I’m much more of the cop-out-and-blog-it-instead kind (speaking of which – Jamie, I accidentally deleted that show you asked me to record; and P, I forgot to take the prawns out of the freezer). But also, I suspect there’s something of a hole in that argument which, let’s be honest, I was neither clever nor brave enough to talk my way out of in front of 250 of the smartest young minds in Britain.

The thing is, at the same time as wanting to close the gap between medical understanding and patient experience, I also wonder whether asking the next generation of doctors to pay more attention to it is an impossible job. Perhaps the only way that medical professionals are able to so successfully treat their patients is because they don’t know that stuff. And perhaps, then, I’ve made a mistake in being so brutally, publicly honest about the realities of The Bullshit? Perhaps it’s best if that discourse goes unsaid, like it always has before? And perhaps our doctors ought to just stick to the more scientific side of their jobs, without the additional burden of having to take on the parts that medicine can’t reach?

What I can’t escape, however, is that my inclination – with health, with relationships… hell, with everything – is that, whatever the facts, it’s best to have them out on the table for all to see. Hence, whether it eventually makes them more successful doctors or not, I think that the social context of illness is a hugely important discipline for medical undergraduates to study. They might choose to take on board their future patients’ experiences away from the hospital; they might not. But knowing that people like Si are making them aware of the gap between the two makes me feel as reassured in medicine’s future as it does proud of my clever mate’s role in it. The smartarse.


Margery said...

You're right. Tell the world just what happens, what the procedures feel like, what the chemo does to you ... I wish I'd been able to read about it before I had it - it would have been less scary even if it hit me just as hard. I told all on my quilters' chat group, before I knew what a blog was, always with the same subject line so they didn't have to read it if they didn't want to, but many of them did read it and sent me so much thanks and support it gave me the warm fuzzies.

Carlie said...

I think that what was so brilliant about your book is the way you told it like it is. I had 8 x FEC and it was horrible. Yes, I coped, yes people called me an 'inspiration' but it was bloody horrible and I wouldn't wish it on anyone. My BCN tells me I 'flew threw treatment' and she's right I did, cos I had to, but it wasn't easy and I think the emotional effects of chemo are the ones that people tend to hide as they don't want to appear negative or weak. That was certainly right in my case.

So, I think it's excellent that your book is brutally honest yet funny and warm at the same time. Breast cancer is treatment is doable but it shouldnt be underestimated....

Feel like I've ranted a bit there...sorry, great post!! And love the new look site.

The Impatient one said...

The trouble is that some people, and I guess you and I are in that group, don't want to "let the side down" or "whine on about it". They told us that we would lose our hair and feel sick with the FEC and they told us about the bone pain with the Taxotere - so when it happens we just accept it and get on with it, because what option do we have?
But of course they can only tell us so much because they have never experienced it. And we don't want to be the wingers so we don't say anything other than "nausea was a bit bad this week".
Also, people's perceptions of how bad things are differ - the border between pain and discomfort moves.
Maybe all chemo patients should write a diary every day (if they have the energy) and hand it over just before the next cycle starts. That way they would see what we said on the day, not what we say three weeks earlier.
PS - found the book in my library and am reading avidly. Promise to buy when I get a job!

Ant said...

This was such a great post - just brilliant. I really miss talking to Si about anthropological thingumies. He really is so fascinating xxx

Lindy said...

As ever, a brilliant and thought-provoking post. Knowing what a pedant you are about punctuation etc. though, I thought I should point out that the person/people thing (i.e. the word structure actually changing in the plural, like child/children) means that the apostrophe goes BEFORE the s!!!

Lisa Lynch said...

I am MORTIFIED that I missed that. Consider it changed. (And a night's sleep missed.)

MBNAD woman said...

Moving and thought provoking, as usual.

Hell is a personal and private space, isn't it? But sharing yours has helped me be a better friend this last year, I hope.

Mad x

Anonymous said...

Medical Anthropologists are a strange breed. I'm an Evolutionary Anthropologist (I get to study fun stuff) and I must say I don't really *get* medical anthropologists. However, this is one of the good things they do, which is to humanise Dr's and medical students. And I really wish I'd been able to get down and sneak into your lecture, would have been dead interesting. Come do one at Durham for our anthropologists? (and medics I suppose) ;-)

Nicolette said...

Love this post, because, as always, you tell like it is. There's no fluffy bunnies, no covering up of the hardship and that's vital when it comes to medical stuff. I think you ought to write a dictionary/translation of medical terms, eg.

"You'll just feel a sharp scratch" (This is gonna hurt)

"It's a simple operation."
(For us, not you.)

Etc, etc. I think you'd be brilliant at it.

Unknown said...

I'm actually in the position of seeing treatments from both sides of the fence. I'm a nurse so I know about asking my patients how they are to be told 'I'm fine' or 'Great!', I do figure that if they were fine or great then they wouldn't be in hospital or have any need for me but I understand that a lot of people have the need to paint a nicer picture than the reality.

However, at the minute I'm off work - I shattered my kneecap in August, 16 weeks on I'm still on crutches, can't bend my knee beyond 50 degrees and was told last week I need another operation before I can get back to work. When I go for my various appointments (outpatients, physio etc) do I tell them I've had nights I haven't slept due to the pain? How frustrated I am with the lack of progress? Not a bit of it! In fact even my physio has commented that if I say I'm tired or a bit sore I must be in serious pain because I normally smile and tell her I'm ok (through gritted teeth!)

Freda said...

Funnily enough I did wonder how you could manage to be so brave and yet suffer so much. Maybe sometimes the medics need to be told exactly how bad things are. The trouble is that the profession as a whole tends to dislike the stark facts, so we try to shut up.