Mik Scarlet's Hospital Diary: Weeks Four & Five

Well, after a moment feeling like a super crip hero for surviving the horrors of my operation, the boredom of day-to-day life has set in.

I have recovered very quickly - my surgeon called me a "healer", at least that's what I think he said - and now I am taking up a bed that could be for someone who needs an op.

I can't really work out what day it is. I only know what time it is because of the ever-ticking clock on the wall opposite my bed, which haunts my nights. In fact, I would never sleep if it wasn't for the wads of tissue that I ram into my ears just after cocoa time. Yes, I am starting to get a system to stay sane, but I don't know how long it will work for!

I was supposed to be going home last week, but all the equipment that I need to exist after I am released apparently isn't available here in the UK. You see, I have to spend six months not sitting up past 30 degrees and encased in a full body cast, which looks like it's going to be fun. The OTs and my darling Diane are trying to find a way to ensure I can go to the toilet, but with no luck so far. So I languish here in my room.

TV is my saviour at the minute. It sits next to me like a good friend, but it is more like a prostitute. Long gone are the days of a free TV when you're in hospital. I have to pay for the only thing that keeps me from going totally mad - £59 per month! All that for five measly channels! With my lovely 1000 channel cable box sitting at home!

In fact, the thing that makes me want to go home the most is the bloody food. How dare this hospital call it food? It is a group of ingredients ruined. I have lost so much weight that I've had to have two new body casts fitted, and I am trying to avoid a third. Honestly, at midday and at 5.00pm a tray arrives that should have a health warning. Sometimes it can be called edible, but mostly it is so disgusting that it is returned untouched. It must be good for you when you are recovering from an operation, to be on prison or war rations. It's not food, it's torture.

I had my operative catheter removed (how nice) and after a day peeing happily, but with difficulty (hey, you try peeing into a bottle when you're at an angle that means you have to struggle to see your willy), a nurse informed me that he wanted to check whether I was emptying my bladder properly. In order to do this, he produced a single use catheter ... THE HORROR! For anyone who hasn't seen one before (like I hadn't), it's a plastic tube just under a metre long with a mini funnel on the end, and they are for sticking up your urethra!

The first foot or so is OK-ish, but then you hit a wall which has to be pushed past ... then another ... then your bladder. It bloody hurts so much that you're unable to swear! Not something I want to repeat! Luckily I am peeing fine, so I won't have to.

It has been an uphill struggle trying to make everyone understand that I have function below my waist. Everyone immediately concludes: "He is in a wheelchair, he must be a paraplegic" - whereas I am paralesic. and I have nearly full feeling and partial function down to my ankles. This means I have full function in my toilet stuff - but no one will listen to me. Instead I keep having nurses come towards me with rubber gloves (for manual evacuation) and catheters. Surely this should be on my notes?!?

I will hopefully be going home next week, so no more hospital horrors. No, I suppose there will be a whole new set of horrors then.

Yippee! I am home!!

Well, actually it's not quite yippee, more "Oh, right". After yet another cock-up booking an ambulance to get me here, I am finally back in Shepherds Bush. Though this is good, I have absolutely no special equipment and no care provision arranged. You see, my surgeon wanted me home to avoid the MRSA infection in my ward - and when they speak, the hospital world jumps.

So I have moved back home into the arms of my girlfriend - and now full-time carer - Diane. Luckily she has an understanding boss who has said she can work from home, and so she can look after me. Being as I can do bugger all right now, this means everything. I am stuck at an angle of 30 degrees or less until October 2003, so I am like a big baby. To say that the joy of homecoming was tinged with the unpleasant truth of how difficult it is going to be from now on is an understatement.

My main problem is that this is a very rare operation. It has only been done four times before in the world; this is the first time in the UK. No one, therefore, has ever had to deal with a person who has the limitations I currently have. It seems that "it can't be done" is a perfectly acceptable answer to my every question, and I am expected to just say OK. I am shocked. Is this what it is like to be tetraplegic? Do you just get sent home, to rely on your family, and to be left in bed forever?

I feel that the NHS has made leaps in surgery, but has fallen down in aftercare. It seems that anyone who is sick or newly disabled is just left. Social Services visited to give me an assessment, but sadly they can't do much either.

I've now got a monkey bar to pull myself up the bed, and a tiltable table that I am using to lay my laptop on to write this, but other than that there's not much anyone can do to make me remotely independent. So in this modern day of techno chairs that can climb stairs (yes, I saw the item on Richard and Judy, a £20,000 piece of hardware to make up for the disabling environments still being created), I am expected to just become an adult baby. OK, I know some fetishists like that kind of thing, but it's not my bag! In the year of disabled people it is just accepted by Government bodies that anyone with an awkward disability must simply continue to dream of an independent life. The DDA is really working, eh?

The most annoying thing for me about being bed-bound is that after a three-year quiet period in my career, I have been getting loads of offers of work ... and I've had to turn them all down! So it's good news for my media rivals but shite for my bank balance. Just wait until next year ... I'll be back, bigger, better and even more freaky!

Anyway, I need to do a pee, so I shall reach down next to my bed, do the deed, and then ask my girlfriend to stop work and empty my bottle. Now that's dignity. I just wish I could tie a knot in it!