I had some very, very depressing news this week.
Someone that I have come to know and love and admire very much has a recurrence of cancer – not as before ( throat ) but this time in the lung, mouth and brain.
The lung tumour is inoperable, the others I don’t know…

This person is one of life’s real examples, and we have formed a bond that I fear will not exist much longer, not I’m this life anyway.

Heartbreaking.

I’ve just been to see Brentford vs Everton

It’s bloody freezing in West London. I’ve never done this before, but today I had a hot water bottle inside my jacket… and I definitely wasn’t hot! That says it all.

Brentford won – good on em! – which was a relief, after a bad run … but I’m still surprised by how unpleasant football fans are to each other.
As I wheeled out of the stadium there were 3 guys having a an exchange of words.

I heard the Brentford fan say ‘ F*** off, you rat eating Scouser ‘

Well that’s nice. isn’t it ? The fella from Liverpool was a bit thin, but I doubt he actually has to eat rats – after all he could afford to get to London to watch his team… but maybe he went without Pot Noodles for a while, and did eat rats, so he could afford the MegaBus from Liverpool? It’s possible!

I’m feeling Christmas’y !

And I have to thank the quite amazing Lizzy for arranging and then taking me to Rome for 5 days.
It was without doubt the best thing I’ve done since my injury.
It proved that there is … ( despite me often questioning it ) a life after paralysis.

❤️

I went to a gig last night. It was Kasabian in Brixton. They were fantastic! I’ve seen them a few times before, but last night they were so much better then previously.
They have changed their lead singer, after the original one was arrested and charged for assaulting his girlfriend.
The band fired him.
His girlfriend married him… One of their big hits is ‘ I’m in Love with a Psycho’ … and Im wondering if they played that whist she walked down the aisle?

I’m sure he’s a changed man .. but the band is definitely better off. The new fella is seriously charismatic on stage and is a crowd pleaser… which is what you want when you see a band – you want to hear them play your favourite songs ( their hits ) and that’s exactly what they did.

5000 people and no masks. I’m away at the side on a platform… but there is bound to be Covid all over the place.

You get all sorts on the Spaz platform. Most are in wheelchairs, but not everyone. There was a girl arrived a couple of songs late that came with her very large breasted friend as her looker afterer.
A few songs later the band had a bit of a Lazer light show going on and there was a lot of flashing. The girl in the chair started to look a bit distressed and put her hand over her face… and I guessed she was probably epileptic. With that her friend suddenly grabbed her seated friend’s face and just stuck it between her ample breasts, to shield her from the lights… and released her once they’d stopped. She did then explain that her friend was indeed epileptic.

To be honest.. … I considered faking an epileptic fit myself after that ! 😅

As loads of gigs got postponed and rescheduled because of the pandemic… I’ve got another one tonight in North London. I’ve got a personal rule – I don’t cancel these commitments – it would be so easy to find an excuse to not do stuff ( because NOTHING is straightforward for me ) .. so I am going to go ( even though I don’t really want to ) but always always I’m glad I made the effort.

But aside from leaving a wet trail between Brentford and Oxford, my train journey ( where the assistance actually worked perfectly- because now there’s an app for that!! ) got me to see my daughter Lily, and also my parents… who very helpfully delivered the bike that I’d sourced for Lily. Well when you study in Oxford I actually think it might be COMPULSORY to ride a bicycle?! So now she can.
Of course there’s a part of me that’s uncomfortable about cycling ( since that’s how I’m in a wheelchair .. ) but aside from that, it makes a lot of sense.

Lily is definitely thriving in Oxford, and was as charming and as beautiful as ever.

My life is governed by piss and shit. Everyone’s life ( in the ‘ civilised’ world ) is governed by the excretion and disposal of those two.

When you are normal, you rarely notice it. You can go to a loo, do what you have to, flush and leave. Job done. Job done 5/6/7/8 times a day, possibly more, but not often is it complicated.
When something goes wrong though, suddenly it’s not background anymore, it becomes very much your focus. Maybe you’re on a train and you need a wee. The toilet is out of action and the train isn’t stopping for an hour. Suddenly all you can think about is how you are going to manage that situation, and it isn’t pleasant. Maybe you’re in a theatre and in the middle of a row and suddenly you feel like you are going to shit yourself. You either hold on or you try to make your way past 10 people in the middle of a performance, causing a lot of disturbance, disruption and embarrassment for yourself.
By and large though you have complete control, other than in early childhood, of how you deal with it. You may have the odd close call, but it rarely leads to calamity.

With spinal cord injury that all changes. All of a sudden you have lost all control of both bladder and bowel. To compound that hugely, you can’t walk or even stand up. So you’re doubly incontinent and unable to run to a toilet. What’s more, you can’t actually tell when you need to go.
It’s why most people that are spinal cord injured and in wheelchairs don’t go out much. The ever present risk of ‘ accident’ and the subsequent inability to deal with the consequences ( while out ) is just too much to deal with. You might have to not eat or drink anything whilst out to minimise the risk of setting your system in motion, so to speak.

For me now it’s made more easy to cope by having a stoma and a suprapubic catheter. I have valves, you could say, that I can seal. But solid and liquid still want to come out. Trying to artificially prevent it from leaving my body just makes me spasm, my legs trembling and jerking. I have a tube sticking out of me and a bag stuck to me. Even those 2 aren’t a guaranteed seal though. Both can rupture or just leak. I spend a lot of time and effort just trying to make sure I have sufficient supplies of catheters/ bags/ sprays/ sleeves/ tubes. If I’m not onto it, it’s very much a problem, and the supply chain lets me down regularly. It’s not enough to send emails and make phone calls, because still human error ensures that I have regular stressful times where I am dangerously close to running out of what I need.
In the pandemic, people panicked at the prospect of not having toilet paper. There was a genuine fear of not having enough. In the event that you ran out there are a thousand ways of managing without it. There’s newspaper, tissues, bidets, leaves, cloths you can wash etc etc etc. Not many people were really in danger of having drastic toilet disasters, yet still there was widespread panic and headlines in the news.

All spinally cord injured people live in that world of panic all of the time, but for us lot it’s real, with the very real accident waiting to happen scenario there constantly. It’s a thousand times worse than being down to your last multi pack of Andrex.

Currently I’m on a train to Oxford. The leg back that my Pee drains into, is leaking. A week ago I made a pleading phone call to the supplier, for more. Two weeks ago I was online to my doctors surgery website ordering a supply. This morning this last bag sprang a leak. I’ve used duck tape to try to stop it, but it hasn’t worked. I’m slow dripping therefore. I don’t think I smell, and it’ll probably be dripping onto the ground/ floor rather than on me, but as I can’t feel whether my feet are wet, nor even reach down to them to feel with my hand, I just don’t know. I phoned again today. They said they didn’t understand why they hadn’t been sent…. two hours later I got a call ( when I was on the station platform ) to say that a taxi was rushing to my address with a supply. I said I had gone out. I could hear the surprise in his voice – ‘ you’ve gone out with a leaking bag?’ Normal people wouldn’t go out if they were liable to leak wee or poo, would they, and this guy on the phone was able bodied… but my life is like this all the time, I wanted to explain. I didn’t, I just said to tell the driver to make SURE he left the supply somewhere I can find them.

These days doorstep parcel theft is rife, with people selling the proceeds down the pub.
So if you see a fella in your local boozer trying to shift a pack of 750ml short tube leg bags, you know where they came from.