Fashion Crisis Hits West Cork

I tweeted one tweet a few weeks ago with the words “fashion blog” in it.

I was being ironic.

I suddenly gained about a dozen followers, all pouncing on that precious phrase, in case I was going to be the new Kourtney or Kim or Khoever.

Once again, I was reminded of how out of the loop I generally am when it comes to popular culture. The fact that I really, really don’t care about Kardashians, or contouring, or what a bucket hat is, means that there are whole swathes of social media conversations that are divil-all to do with me.

And that suits me just fine.

I have, though, been wandering around the periphery of an ongoing social media debate which is of some interest to me. It’s got all of my favourite ingredients: cancer, food, medical advice, science, evidence. It relates to the fierce war that is raging between two factions, both of whom are adamant that they are right, and insistent that the other is evil and conniving. Pretty standard war stuff, then.

There are some great words being used in this debate: nutribabble, woo, ketogenic (it starts with a K! it must be right!), Goop (makes me think of Augustus Gloop, whom I am fairly sure is not the target market). 

It centres on the very much not-new propensity of sometimes well-meaning, sometimes unscrupulous types to offer alternatives to the traditional, establishment-led treatments for various ailments. Been doing it for years. Snake oil being a fairly classic example of the kind of thing we’re talking about.

It works like this: 

(a) find the thing people are most afraid of, and are most likely to die from

                             
(b) suggest to them that there might be a better way of getting rid of it

                             
(c) subtly suggest that what they have been told by the people they thought they could trust is actually ALL WRONG

                             
(d) not-so-subtly suggest that what they are now being told is ALL RIGHT

                             
(e) sit back and watch them choose your (not free) method over the other (mostly free) one

                             
(f) get in a huff when someone suggests that, perhaps, simply believing something to be right, or good, or true, does not unfortunately make it so

                             
(g) say that those other old stick-in-the-muds are just jealous, or money-grabbing, or egotistical, or stupid

                             
(h) get in an extra-big huff when the advertising standards people tell you to stop saying things that aren’t true in order to sell your ideas

I have been fortunate enough to be able to stay away from the woo-peddlers. No crystals, or angels, or coffee enemas, or chelating agents for me, no sirree. Not just because I am a traditional, stick-in-the-mud, my-medicine-is-the-only-good-medicine kinda of gal. And not only because I am too lazy to go actively seeking out stuff that sounds icky and hard work. And not simply because I have been so fortunate that the treatment that I have been getting has been so successful.

I think it might be because I have a highly tuned bullshitometer, which has stood me in good stead in many a Cork nightclub/Nairobi taxi/Honduran fleamarket.

But there are many other people who are open, and kind-hearted, and willing to listen and believe when someone tells them that they are on their side. They are not grumpy old cynics. They presume that people are fundamentally good. (Not Nick Cave fans, then). And if they are sick, and sad and really hoping to feel better, they are particularly likely to grab the outstretched hand, no matter what unicorn-dust that hand is offering.

What’s the harm, though? So what if the unicorn-dust is entirely useless at actually curing what’s killing them? Can’t they have hope? Won’t positive thinking get them through, like Dumbo and his feather?

Hey, I would be all for it if it did. But they are countless stories that show this is not the case.

(Well, I say stories, but what I mean is scientific evidence based on multiple longitudinal studies and backed up by rigorous research. But that doesn’t sound like nearly as much fun as unicorns.)

It’s all a bit of a shame really, because as usual the truth lies somewhere in between. It is probably fairly reasonable to say that what you eat and drink can indeed affect your health. 

I can’t see where we would fail to agree on that one.

A litre of vodka a day = likely to be bad for you.

Your bodyweight in hot dogs every week = also not great.

More fruit and veg, fewer Cheesy Wotsits = a good idea.

There is EVIDENCE (ooh, the real stuff, not the makey-up Google-search pixie dreams) to support the physiological benefits of a number of nutritional choices.

But there is a risk that this will get drowned out by the hollering of the opposing forces, on the one hand insisting that cancer is all down to the fusilli, on the other hand dismissing any suggestion that quinoa might have all the answers.

I choose to put “better” food into me than I used to. 
Does it help? Has it changed the course of my disease? Who knows. 
But at least I am not paying someone to tell me that it is the ONE TRUE WAY and that all other courses of action are doomed to failure.

Anyway.

Back to fashion.

Here are my tips, all the way from a windy little island in the Atlantic:

• Wellies without socks will cause above-ankle welts
• Always put suncream on your feet
• Wind+seasalt can create hair so immovable you may never need, or be able, to brush it again
• Trying to hold on to your hat and a toddler at the same time is untenable. Choose one. 
• Lash the nail varnish on indiscriminately, then clean off the skin splashes with a q-tip dipped in nail varnish remover. (This is a real tip. You're welcome.)

What a hippy diddly crazy world.

Fancy Dancy

Eeeek.

I appear to have fancified my blog, and now I don't know how to unfancy it. 

I know, I'll distract you all with some pictures while I figure it out.  

Showing off my altruism

Showing off the fancy dinner I had last night

Showing off my dance moves

(and someone else's arty camerawork)

Right so, you just keep chatting amongst yourselves now while I figure this whole blog thing out........

Put It To The Testo

Now that I am where I am (cured/better/currently not dying, depending on who you talk to), it is time for me to venture out into the world of cancerheads and make some friends. 

I have a few virtual cancer friends, tentative relationships formed through various social media chats, based on shared experiences of hospitalisations, side effects and general bad luck. It is reassuring to talk to a stranger about very specific personal things, while knowing almost nothing at all about the rest of their lives. They could be U2 fans and I wouldn't even know! Or they might talk on the phone with their mouth full! People I mightn't like at all in real life, but I have a real fondness for them in the Etherworld. 

So to cross the virtual divide and actually engage with fellow up-the-creekers in real life was a bit daunting. I did manage to make the reality fit the analogy though, by crossing the divide that is the Irish Sea, and shoehorning myself onto a Ryanair flight to make my way to London. 

{An aside - travelling without children is liberating, but also totally terrifying. You never notice the massive turbulence lurches when you're wiping cheap cheesy dip off your jeans while reading Jack and Jill and trying not to spill your scalding hot tea on yourself.}

I was attending a meeting of people in almost exactly the same boat as myself. (Not a great boat. I wouldn't recommend it for a transatlantic crossing. Or even a jaunt on the Lough). We all had metastatic bowel cancer, or knew someone who has/had. 

There was also a respectable number of professional types whose job it is to fix us and our ilk. They had gathered us together to ask us what we thought they should do. 

{Always worrying, when your doctor says "well what do YOU think is the answer to your problem." I've done that to patients, thinking they'd love to be asked, but they generally look at me with a  mixture of disbelief and disappointment, like when you tell your mother you forgot to bring the washing in and it's strewn across the sodden grass outside.}

But these people were asking us what ELSE they should be doing, beyond the usual cutting/poisoning/frying of cancery bits and sending us on our way to live or die.

What are the things that really matter? There was a lot of talk about Quality of Life. A vague concept, to be fair. I mean, some people think their life would be improved by watching a short fella in stupid glasses going on about somewhere with unnamed streets. 

Some people want or need to be able to work. Some people want or need to be able to have sex. Some people want or need to be able to sit in their chair watching Coronation Street without ever having to go back into a hospital, even if that means they won't live long enough to find out what happens to the Platts in the end. (Not that Corrie will ever, ever end.)

It was really enjoyable to listen to the others, not to share the specific experiences of who had what surgery or which anti-emetic is the best, but to see how extraordinary everyone was in their ordinariness. Just people. Young, old, male, female, mothers, wives, widows, friends, children. I think someone coming into the room by mistake would have been surprised to hear how many of us were what you might reasonably call "terminally ill" (though we did all agree that no one likes that phrase. I've decided "advanced" is much better. I have "advanced cancer", like I've done extra classes after school in it to get more points in the Matric.) We didn't look like the Coronation Street version of cancerheads. Even the lady with no hair was the chic-est baldy I've ever met.

So, to answer the question I travelled all that way to be asked: what should be done to help people with advanced bowel cancer?

Here's my manifesto:

• Listen to what patients tell you about drug side effects. Just because it's further down the list of "possible", doesn't mean it's not happening to them.
• Lots and lots of physio - prehab, rehab, pre-op, post-op, intra-op if you like. Loads of the stuff. For free please.
• Think about how and when you give scan results. Tell the patient when they have the scan how long it will be before they get the result. Don't make us wait too long, but we don't mind waiting if we know when it's going to be. It's the not-knowing that freaks us out. 
• Tell us the plan in three-monthly instalments. That's how our lives work now. 
• Help us to manage the sadness/fear/hope, and the whiplash-inducing transition between them.
• Ask us about what matters to us. After all, we're one, but we're not the same.