Monthly Archives: February 2017

A close friend asked me what I thought about, on waking. She expected a ‘ more normal ‘ answer, I know.


This was my reply –

Normally, it’s whatever it is that woke me up.
Things are VERY different for me now from how they were pre surgery in the summer.
So spasms normally wake me. Today I was very thirsty and reached for water, which I spilt on myself.
I check how long I’ve slept, I check if I’m lying in shit or not.
Then I check if I can reach my phone or not.
Today the first ‘ other thing ‘ I thought about was Beach tickets ( a band ).

My life doesn’t consist any more of a nice sleep and waking with nice thoughts.
My day starts with the practicalities of my condition

Ok with that?

Pourquoi pas?

I finally started spoken French classes last week.

I passed O level French when I was 14. I got an A grade too, so it suggests it was a subject I had a leaning towards..  Since about the age of 27, I’ve spoken it on ski trips to France, where I’ve tended to ski with the French, rather than the British – well they are better skiers, obviously, and I used to ski to test myself, rather than just to ski within myself. Improvement doesn’t come without pushing yourself hard, as most sportsmen know.

Anyway, my spoken French is actually ok, but I struggle to understand the French replying to me at speed.  I think that because I sound like I can speak it fairly well, the French just go for it in their  replies,but have a tendency to lose me in the process.

So… class one of 17 done. Tbh I loved it, though couldn’t help swearing ( in French ) a bit too often in the conversations…  I’m not sure you can get detention at my age, on a paid for adult education course….. but there’s always a first?

‘I do ( but I don’t really mean it )’

For richer, for poorer.

For better, for worse.

In sickness and in health.

I think these phrases ought to be properly explained to prospective married couples, with examples cited, and talked through, pre church.

‘ If she gets MS, and gradually loses everything, if he loses his mind, if he loses his legs, gets half his face blown off, if she became a paraplegic… then what then? Would you still stick by them?

Far from everyone can cope with these things – the care required, the resources required, the change in their social lives,   the unconditional  love thats necessary, the adjustments to be made to their homes – all stressful stuff, but all hinted at in the marriage vows.

Rarely do people get married knowing that their health might suddenly deteriorate, prematurely, and I wonder how often people even consider the inevitable slide into lesser health that accompanies age/senility.

How a partner copes with their partner’s ‘ health downfall ‘ is a true test of whether that partner meant what she/he said/repeated that day at the alter.

I now look at couples and analyse them to a degree, or at least think about what might result from that  eventuality.   My conclusions ( which are all guesswork of course ) are that quite a few people probably didn’t think too hard about what they said at the alter,  the wedding being a lot more about the dress and the party than the real reason for betrothal.

A description.

I don’t think people know what it actually ‘ feels like to be paralysed from the chest down, as I am, so I thought I’d try to explain.

Being paralysed from the chest down feels like being stuck in quicksand up to your chest.

It feels like that all of the time.
It never goes away, even when lying down it’s there.

In quicksand, you’d at least be able to struggle, with the outside possibility of escape.  With paralysis, you can’t struggle, and you know you can’t escape.

That feeling of being hopelessly trapped diminishes here and there, but never completely goes away.


Space hopper.

Another catheter, that is supposed to stay in, pulled out yesterday. That’s another prune sized balloon that’s pulled right through the valve into my bladder , and then right through my penis.

I’d pretty much pleaded with the District Nurse team to change it for one with a larger balloon, that can’t pull through.  Again and again they said ‘ no, best to leave it in, as changing it could lead to infection ‘

Never mind the f******* risk of infection, what about the damage done to my insides by the trauma of it pulling out. It’d be like pissing a space hopper, if I could feel it.

The one that’s in, that I put in myself, in desperation , everything moving around as I violently spasmed, is obviously too small too, and is destined to pull out as well.  I left a voicemail with the District Nurse team saying that I’d sue them for medical negligence if they didn’t change it for a larger balloon size asap.

Funny how suddenly it’s appropriate to change my catheter…. and it’ll be done in the morning.

Why on earth do you have to threaten legal action before the obvious thing is actually done?

I hope my fairly constant spasms are dampened at the same time – makes sense to me that I’m in pain that I can’t feel, as that space hopper is forcing its way half out…and my body doesn’t like it a bit.


Thankfully Berniece does not seem to be in charge of DN policy, and nurses duly turned up as  per the schedule.  I’m not sure if she does it deliberately ?

Anyway… successful work Meeting today… nice to be in Staines after 8 months of not being there!

Brilliant night on Tuesday at Warchild charity gig night – Tinie Tempah ( no, not an angry midget ) was actually brilliant, along with support acts – particularly Anne-Marie.   Definitely feeling down wiv da kids….

Thank you to my friend #BFFPia  for being my gigbestie. ❤


PS thanks to Sian…

Do the math ?!

The District Nurse comes every second day to do my ‘ bowel care ‘. She came yesterday, Monday.

There are quite a few DN’s in the local team. Berniece told me that this week most of them were on holiday, so they’d not be able to visit on Wednesday, or Thursday either, so it would be Friday.  A look of fear crossed my face and I said that that meant I was going 4 days ‘ without going ‘.

This particular DN is ‘ tricky’, let’s say, in most conversations.  I said that’ll mean that I go 4 days without the necessary attention. She said ‘ no, we’re only missing out 1 visit, so it’s only 2 days ‘.

I tried several times to convince her that i was being left for 4 days, rather than 2, but she wouldn’t have it.

I’ve realised that arguing with Berniece isn’t effective, so I’ll resort to other tactics instead, to ensure that I’m ok.

It would be funny, if it was about something else ?




At the RGS last night, a lady called Sarah Outen gave a talk.

She’s certainly done a few things, our Sarah, including rowing the Pacific solo, and being rescued from incredibly treacherous high seas on 2 occasions, by passing freighters.

In common with lots of people that do extraordinarily long challenges of thousands and thousands of miles, she didn’t ‘ look’ like an athlete, physically.  She wasn’t proclaiming herself a racer of any kind, rather an adventurer, a  plodder not a racer, but with an amazing capacity not to give up ( although a few times she’d had to, or probably die )

There were quite a lot of occasions in her talk that she referred to her marriage – that being to another lady.

In 2017 that’s hardly shocking, let’s face it. At the end, as is traditional, there were invited questions, which she answered cheerfully and honestly, that being her style.

My hand shot up ( of course ).

My question was ‘ I wasn’t sure how to phrase this  Sarah, but do you think you might be the world’ s most adventurous lesbian ?’

But I never got to actually ask it, as they ignored my hand, and fielded other, equally important questions.

I told Mark what my question was going to be, and he kind of shook his head. I think he’s just jealous that I think of better questions than him ?


Sad day.

Today a massively wide and sudden avalanche killed a family of 3 plus their snowboarding guide in Tignes, in France.

Some people I know had been skiiing in that EXACT area only half an hour before.

My current wife said that they’d been lucky not to have been there.

I questioned the use of the word ‘ lucky ‘ and its appropriateness in the circumstances.  Not agreeing with me is normal, of course…

I put various alternative phrases forward, to no avail, but finished by saying that I bet none of the 11 cyclists who’d been with me that day in June 2013 had ever said ‘ it was lucky that I wasn’t there as that motorbike came around that corner too fast, or I’d be paralysed too ‘

So timing, chance and the mountain ‘spared’ my friends today.

But lucky, they were not.

Today in Tignes, no one was lucky.