Wednesday, 3 November 2010

mankles, shut-ins, sleeping with towels and john merrick's neck muscles

I have Manacles. Mankles are a swollen ankles that only men get. Women get Kankles/Cankles but men get Mankles.

I made this word up. It is a skill word.

Why do I have Mankles? It's a 'rare' side-effect of the pain-killers I am taking. It's on the biblically epic side-effect list on the leaflet in the box of the pain-killers.

What does this mean. Well, walking is now less pleasant than it was - and walking used to be pretty shit anyhow to be honest, as lumping lumps around is no fun. Walking? I need a Segway.

That's moan number one. Let's move on. There's much to get through.

I am now officially a shut-in. A 'shut-in' is an American term for people who are too fat to leave the house and have to have crisps delivered by diggers, or something. They were floral dresses because no clothes fit and eventually Jerry Springer smashes down their house so they can leave, which make for good TV, but after a while they get cold and wish they hadn't agreed to it.

OK, so I'm not filling a lot of the above criteria but I think from now on, I won't be going too far under self-propulsion. Let me explain.

Last night I witnessed an amazing football match. For 90 mins, I sat on the edge on a football pitch and saw the World Class players of Inter Milan (current European Champions), being taken apart by (relatively) new sensation Gareth Bale and his fellow team-mates. The atmosphere was electric and did somewhat embarrass Old Trafford's sometimes quiet crowd (although White Hart Lane does have the advantage of being about half the size and tightly packed-in).

OK, so this isn't a football/soccer blog - what's my point? Well, the hours either side of the 90mins were VERY tough. The journey to my friend Mark's house who took me into London, was hard. Pain gripped my left hand side and by the time I got to his house, I was angry, stressed frustrated, sickly feeling and - well - not an ideal guest.

We were slightly late, and Mark drove to the ground. I lowered the car seats to a lying-down position and was shovelling down pain-killers and sweating and not really talking. Things got a bit better as the journey continued.

We then had a walk at the other end. I'm so slow and it's only when I get 'out there' that I realise how 'out there' I am. I feel different somehow. People bump into me and walk through me, chests puffed out on the way to the 'footy'. I meekly try not to get in anyone's way and try - but fail - not to moan or talk about cancer the entire walk.

Once in the ground, Mark introduced me to all the people around me in the Season Tickets holders seats and I felt more at home. I was able to relax a bit and enjoy one of the greatest games of European football that has been played for a long time.

Then came the walk home. I was knackered. My pace was so slow. Mark was struggling to 'keep down' (I assume this is the opposite of 'keep up') and I think I was starting to annoy him. I was annoying myself.

We finally got back to his place, I grabbed my car after a quick caffeine boost and drove home, thankfully with very few cars on the road. The side-pain ever present, I made a vow to myself that I wasn't doing these nights out anymore.

No car journeys over a few miles, if I'm not feeling 100% up for it. No crowded events (gigs, etc). No situations where I HAVE to walk a distance. Obvious local shopping etc is fine, as you can just stop for coffee or go home - but no 'there's a 20 min walk at the other end' type things.

I need to stay warm, safe and near a kettle, my bed, my sofa, my toys. It's a scary world out there and whilst, of course, I will be doing stuff, I really have to limit the areas to where I will go and what I will do.

A friend who was a MacMillian nurse for kids, said to me some time ago 'We tell all parents of cancer suffers to expect every day to be hard. If you get a good day, that is a bonus'. I didn't buy this when she told me. My days were mostly good and I fought hard again the bad. The balance of power has shifted now. Most days are tough. You get good 'periods'. You don't get good 'days' anymore - not what I would call a good day. A good day is a pain-free, able-to-drive, feeling-fit, eat what you like, drink what you like and not worry about poo'ing kind of day. Those days seem far behind me.

So, I am now a shut-in. You'll find me in my flat in my lounge-wear, tinkering on the internet or with music. Where it's warm, safe, soft and ...

... damp.

Christ, I sweat a lot. A lot. I know this isn't a new thing. But it's pretty rampant now. I go to bed with towels and I wake about every hour in the night, lean over and fumble for a towel (don't open my eyes - salt water will pour in), and towel myself dry.

Then about three times a night, I will quickly slide out of bed, into my en-suit bathroom and turn on the hot-air blaster heater thing that's on the wall. An amazing device, it gets so hot that it could take the skin off a rhino in about 3 mins, it's perfect for drying out a soggy, rather pathetic looking man standing there in a two tone set of grey 'pyjamas' (two tone, due to the soaking wet parts and the 'just damp' parts).

The hot-air blower is a life saver, along with the electric blanket that stops the sheets from becoming freezing cold.

My sheets are covered in suspicious look white stains - I've had to explain to my cleaner, that I haven't regressed into a state of teenage hood but they are merely salt deposits that have dried out.


Right, that's three of the four things I wanted to talk about sorted.

Let's close todays moaning session by talking about John Merrick's neck muscles.

Mr Merrick was The Elephant Man. If you haven't sent this film, then basically there is a huge whole in your life that needs filling. Go and see it, cry a lot and come back. Off you go.

Now, whist we're waiting for the Americans to catch up, the rest of you will remember that John couldn't sleep like a normal person, because he had such a heavy head that he wouldn't have got up again and it would apply so much pressure on his wind pipe, he would suffocate and die.

Well, I reckon my head is about a quarter of the size of John Merricks, although certain ex-girlfriends would swear blind it was bigger.

On Sunday night and last night, I found that The Pain wouldn't let me sleep lying down. Not on my back, not either side. Thank you God. The only thing that seems to not be causing pain, was to sit upright, with my back against the backboard, sometimes even crossed legged on the bed, as having outstretched legs seems to hurt.

This is not an idea sleeping position - unless you're Gandhi or someone else trained in the art of looking like you're meditating for hours, when really you're taking a nap, dreaming about eating giant iced-buns.

For someone like me, it's basically a, *searches for right phrase*, yes, it's a fucking drag. Yet, be sleepy enough and you can sleep in just about any position. Besides I don't 'sleep' anymore, I have a series of 10 x 40 mins naps, broken by trips to the hot-air blower, toilet, towelling sessions or fluid replacement guzzling - so a couple of 40 mins naps in an upright position is not too difficult, as I'm so shattered.

But when you wake, you will find that you are now leaning to one side and slightly forward at about a 50 degree angle, dribble is coming from your mouth but not quite reaching the duvet and your neck hurts like a bastard.

In fact, I think I could get used to sleeping upright if my neck muscles didn't hurt.

It stuck me at 4:00am how amazingly strong John Merrick's neck muscles must have been to keep that great lump upright whilst he slept. Respect John, respect.

So, I think I need to invest in a travel pillow thing. An inflatable pillow that goes around your neck and supports your head as it lolls to one side - used by aircraft passengers. This should help support my large, empty head and stop it pulling me over mattress-bound, like a thin-spring with a ball-bearing stuck on top. Tools to aid a floppy head.

Right, we've covered a lot today folks. We've covered my admission that I cannot run around Planet Earth doing the things I want to do anymore. My 'going out' social life shall be restricted to local gentle activities, minimal driving and not a lot else.

We also talked about swollen ankles, sweating and sleeping upright.

We moaned a lot.

Well, I moaned, you listened.

Here endeth the moaning.

And almost simultaneously, the listening.

1 comment:

Fiona said...

Hi Spencer,

I want to say.. well, something nice and lovely and comforting, but I can't think of anything adequate. So I'll just say that with the travelling I've been doing, I've experimented with different travel pillows (I was thinking of recommending that before I saw you write it) and I've tried all the ones that Boots do - the blow up ones, and I find them all to be rubbish. I found one in Las Vegas recently and it's like a bean bag thing, full of those little polystyrene balls... much better, honestly. And one side is covered in velvet, which is a really nice thing to have your face against. I recommend them thoroughly, I've sure you can get them outside of Vegas.

I'm really, really sorry to read how utterly rubbish things are with you. Um... but - the shinto prayers I made all came true so far. I found my Japan Rail pass, my dad has had a great candidate turn up at his recruitment business and my sister is feeling less pregnancy related sickness. Could be a coincidence, but still, you never know... fingers crossed...

Fi xxx