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.