A sudden motivation.

Officially, baby sitting ended last week when the post-surgery risk of a seizure reduced. But Oliver had terribly bad man flu so worked from home most days, and mum was on reading week so was around a lot too. It has been great to have people to talk to during the day, but I am looking forward to spending some time on my own. I can't remember the last time I was on my own (except the night before surgery).

It's Monday and I have loads to do. I discovered two amazing websites this weekend through the Guardian, both about education. On Saturday I found the Guardian Chinese Challenge on Memrise and over the course of the morning - in three minute bursts (perfect for my concentration span) - I learnt about twenty symbols. You can learn loads of things on Memrise, I plan to learn some French vocabulary and all the flags / capitals of the world. Something I can show off with down't pub.

Then on Sunday I read about Udacity, which really intrigued me. I haven't had a good enough look yet but I believe I can learn to programme in several languages, and something about artificial intelligence. Awesome! It may require more concentration than I currently have, but I plan to research it today.

So I have lots of learning to do. If I'm going to be off work for a while this will make sure that I am still using my brain. My newly uncramped brain.

Also, drum practise - I need to do some. And get some passport photos for my freedom pass application. It's great that if you can't have a driving licence for medical reasons (as opposed to being banned for drink driving) you can get a freedom pass which gives you free bus travel after rush hour. I'm not looking forward to the passport photos though, I hate those booths.

Right then, busy day ahead, and my list is waiting. Best get cracking.

I have no free will.

The trouble with deciding not to worry is I don't actually have any free will so it isn't something I can control.

[I urge you to watch this, it took me a few goes to get but completely affected me, I loved it. I had always been a spot embarrassed about my taste in music / art / culture (I am not what you might call cool) but this whole lack of free will idea made so much sense to me and took away the responsibility I felt to like what everyone else likes. It was months ago now and I'd forgotten it's impact on me until yesterday, and seems just as appropriate now. This is the second Sam Harris plug I've done but I really recommend watching it.]

Random thoughts are popping into my brain, and it's not me who puts them there. What if this is the last time I can cut up my own food. Jesus. What did you think that for, dude? Stop crying already.

It's getting tedious.

But it's ok, it'll be daylight again in a bit and everyone else will soon wake up. My melodramatic what if's should recede to manageable levels once more as I get embroiled in last minute tasks I've saved up for today, to panic over specially.

• Pay the outstanding council tax bill. Probably should have fast tracked that one.
• Cut nails (What if.. SHUT UP BRAIN not listening)
• Buy dressing gown
• Pick up latest sick note from the doctor's
• Tidy bedroom just a little bit as its quite embarrassing and people might see it if I'm away for a while
• Decide on music and entertainment to take in with me
• Join library and get audiobooks out
• Pack hospital bag
• Practice drums
• Go to hospital

That's what my today looks like. Might just skip to the drums, that should wake everyone up. I can blame my unsociability on lack of free will.

Dark surgery thoughts.

I've been wondering how much thought I should put into the possible outcomes of surgery. I do like a list, and have been thinking that if I wrote the potentials out in order of worseness, would it help to see it in black and white and allow me to contemplate what I'm worried about? So far it has been there on the fringes of my thoughts, but I haven't really explored it.

I know the bad stuff is incredibly unlikely to happen, so it's hard to not start everything with "I know this is unlikely but...". Maybe I do just need to get it out and then look at it for a while.

In a particular order, or just as they occur to me? I'm just going to start.

What could happen?

1. I could be fine. I could wake up after surgery and have a little headache but be fine. Yes please. 
2. I could have temporary loss of movement in my right arm and leg. Physio, recovery time, maybe a week or so and then back to normal and home. That would also be fine.
3. Not-so-temporary loss of movement / weakness. Hmm, less fine. It's clearly not ideal but something I can work through. I'll have another arm and leg, and the capacity to learn new brain pathways (apparently) and physio and stuff.
   The main problem here is things that just don't seem too important right now, but I think will later. Like handwriting (I like my handwriting) and chopping. I love cooking, and I love chopping. I'm really good at chopping garlic finely, it's just something I have a talent for and it would be a shame not to be able to wield the knife anymore. Does seem a little unimportant though, in the big scheme of things. And playing pool (I am shit at pool unless I've had 2 and two thirds of pints of lager, for about three shots. I also haven't played pool for about three years, but I may want to again).
4. Speech impairment. Bad, this is bad. Communication is something that I really need. I'm sure there are lots of things you can do to improve it, speech therapy and hard work, but this is something I do not want to happen. Big worry.
5. Sight impairment. Also bad, but to be honest not as bad as the speech. I would still be able to communicate and that definitely seems more important right now.
6. Long term damage to concentration / memory / general confusion. This would be terrible. It really would, like the communication. I'm struggling with concentration and noise at the moment, but I'm hoping that it's just the exhaustion and generally weird situation. Going forward, any memory problems would be a disaster. Or ability to multitask. Basically anything that will prevent me from doing my job, well. This is a real worry too.
7. Locked in syndrome. I know, I've been reading too much and they told me to stop reading at the hospital but I can't help it. I do not want locked in syndrome. If I get it, please stop all medication and food immediately. I would want to check out.
8. Anything that leaves me with a long term physical disability that would prevent me working and would ruin Oliver's life as well as my own. This is really I suppose the problem. If I lose dependence for myself, and have to rely on other people caring for me then I just can't see a positive to that right now.
   That is very sad because there are so many people who live that way and I'm sure are wonderfully coping with it, but I just can't imagine the burden. The guilt. The dead end and fruitlessness. It's ok doing doss all for now, but not being able to work ever again, I just. No. This is really the problem area. Don't want this one.
9. Anything that leaves me with a long term mental disability - as above. Although I guess that's marginally better as I may not be aware of it as much. Selfishly.
10. Death. To be honest, I'm not worried about this one now. If I imagine it then it's sad and I think of Beaches and have a little cry - but I'd be dead so I wouldn't care. 

Look at that, a nice round 10, who would have thought.

Basically, on reflection then, I think it boils down to independence. If I can manage to look after myself and get back to work in a capacity to excel, then I'll be happy. It could take some time and hard work - and I may not ever have quite the function I do right now - but this would definitely be a good case scenario.

If I can't look after myself and need to rely on someone else I care about giving up things to physically look after me then this will be very difficult. And if I can't function in meaningful employment that would also be incredibly bad.


Right. Well that's good to have sorted out, at least I do know now what I'll be wanting to find out when I wake up. And also an idea of what to focus on and work towards: independence, and getting back to work.

I haven't touched on what is worrying me about the surgery itself, think I'll save that for another treat. But this has actually been really helpful, and not at all as morbid as I was expecting. I'm glad I thought about it.

Mind versus body.

The last couple of days I've really felt like I've made marked breakthrough, mentally. I am definitely more positive and more motivated and more in control of things. I've made proactive decisions, got a list (did I mention the list?) and actually had plans outside the house with a goal in mind. It feels like I'm looking forward again instead of reeling in the shock I was adamant not to be feeling.

The frustration has been that my body doesn't quite seem up to it yet. I knew I'd been weak but moping around on a sofa all day is going to do that to you. I think I thought that just deciding to be strong again would kind of just sort that out. It hasn't.

Yesterday for example, this is what I did all day:

• Had a shower (a very quick one, short hait is brilliant in the shower. But it really took it out of me and I had to lie down to recover for twenty minutes)
• Was driven directly to the train station, where I walked about 100 yards and up about 15 steps
• Sat on a train in a daze, then walked about 50 yards and about 30 steps
• Sat in a car without moving being chauffeured like a cellabritty
• Sat / lay in a friends house all day like a primadonna
• Walked about 300 yards slowly by the sea (it was lovely)
• Was driven home to my door by the trusty chauffeur (in rush hour, having had no sleep herself due to toothy Flora)
• Nearly died of exhaustion

I didn't even do anything all day! I was just so tired on the way home that I couldn't even move my arms. I had to psyche myself up into answering the phone, and I had spent the day literally sitting down.

Slightly worried about this and really it's quite frustrating. I just don't understand it as this tumour has been there for years, it can't be making me tired. The drugs have come down in dose now and realistically are not wasting my muscles away - they're bloody steroids for gods sake. And mentally? I just don't get that mentally trying to process big news can make me actually weak.

On the plus side though, my legs are quite thin. Shame I can't actually walk on them and show people.

Today we have a bit of a day planned and I think I might have been a bit over ambitious. Drinking tonight in Camden is looking unlikely after all. I wanted to do it for a few reasons, to make an appearance and say happy birthday, get the hideous hair situation out in the open, be a bit normal, achieve a mission and therefore feel better. (Notice I put all the selfish reasons at the end, should probably read that list backwards).

Anyway the point is I've kind of been working up to it and hoping it would be a watershed but after yesterday I am ready to abandon plans and that would be a shame. I need to make sure that it doesn't get me down though as that would be rubbish. I do feel like I have improved so much mentally and am way more positive, I don't want an aborted mission to set me back again.

Come on body - buck it up a bit!

I've made a list.

That's all it needed, a decision and a list. I couldn't sleep again last night as I have been contemplating surgery a bit more - I'm going to write about that separately - but the upshot is that I made a few decisions and that has helped me feel better.

Firstly, I have decided to cut my hair today. I have found pictures that are acceptable. Acceptable. And I have a list of hairdressers to call today to make an appointment. Just a decision in itself has given me something to do today, like a plan. Then I got up this morning and made a list on my work pad. It's great it has like 12 things on it.

So I have a bit of a busy day today and I'm feeling so much stronger and just ready to get on with it. The time has come to start again, I don't think I was wallowing as such, maybe just getting used to things and the new pace my life is taking right now. But I need to be self sufficient and not hanging around all day waiting for mum and Olly to come home. I don't want to be totally dependent on other people's plans, I have to have my own.

Also, yesterday I ordered clothes from Marks and Sparks and they're being delivered today. The impact of new clothes cannot be underestimated. This may even call for a shower (even though I have the best pyjamas on the planet and it's quite hard convincing myself to wear anything else).