Total grump fest.

Well. I suppose it was due, but I just had a major grump. Having been looked after hand and foot by my mum while she studies full time for an MA and generally cleans, cooks, washes, shops, feeds and motivates me, I just totally grumped out at her and managed to simultaneously be incredibly selfish and nauseatingly victimised. Sheesh, I really wish I was a bit more grown up. I've apologised now and of course she said it's fine, I'm allowed to be grumpy but really, I would have hoped to be above this.

I reached my line though which was good. I knew I was taking it too far and using a brain tumour and exhaustion as an excuse to act like a toddler. At least I realised it and managed to stop. Hopefully I won't do it again. (I'm totally going to do it again, I can tell).

My changing relationships.

Something I've been thinking about for a while is how this is changing my relationships with people. I suppose at a deeper level it's about how I am dealing with things differently and how the change in my outlook is affecting the way I interact with people. It's quite interesting.

Mostly it's people that I don't know particularly well. I know them, we get on and like each other but we don't know each other. I guess. Does that make sense?

Stepping back a moment, I wonder if I have become more serious. I don't think I have, I think it's just I can't be as bothered anymore to always do the polite thing and say the right thing at the right time and basically stick to any basic social norm. (Trying not to be grumpy is something that I have to work on A LOT in social situations, so the net effect may well be me appearing more grumpy). It's not like I think I don't have to anymore because I have a brain tumour, it's more like I just can't be bothered. Maybe the lack of energy hasn't helped too.

The upshot then is that I am cutting to the chase more, I am not really doing much small talk and I'm being more direct with people. I have noticed I am asking people more questions that I perhaps would not have thought appropriate before, and I am being more interested in the real things rather than the mundane and small talk. This is a good thing. It has accelerated a few of my relationships already I think, in a very good way - it's like we have been able to skip a stage. I suppose if anything, this does throw up more serious things to think about than the weather.

I wonder if it will just be a short term thing?

Also, something I wrote earlier struck me about this. Although I have such a fantastic group of people supporting me, I still can't really shake this feeling that I'm outside, parallel, on my own. It feels like I have to step up and grow up and basically just deal with it and it's like it has actually given me confidence. I know that I'll do this on my own and I know that I'll be fine, but I suppose really it has illustrated to me that I can do it, and I am strong enough - when maybe I wasn't really aware of that before. And that that growth in personal confidence is subsequently allowing me to be more confident in interacting with other people, who maybe I was a little intimidated of before.

Who bloody knows. I'm not sure all this self contemplation is a good idea actually there's a fine line! So self indulgent!

Bye bye hair.

I did it. It's gone.

Currently wearing a big woolly hat as it's really very cold with no hair. In the end it was pretty easy, I sat in a chair and read Marie Claire (what a pile of shite, literally the first 120 pages were adverts - who would pay to put an advert in a list of 100 adverts in a magazine?) while a nice girl cut all my hair off. She didn't try and talk bollox to me and she was very nice and I couldn't really muster up too much enthusiasm so she just got on with it.

I just pretended that I was on America's Next Top Model at the end and I didn't want to disappoint Tyra after makeover week, that seemed to do the trick. It's ok, I can make it messy and I can put a scarf over it. It really isn't that bad, but it is going to take a reeeeeally long time to grow back.

The thing I'm not looking forward to is everyone telling me how great it looks. It really suits me! I have good features for short hair. Maybe I'll decide keep it like this? I look great with short hair! YOU HAVE TO BLOODY SAY THAT because I have a brain tumour and I don't have a choice but to have short hair. The only way I will truly know if someone is telling me the truth is if they say it looks terrible.

So I'm getting ready to just smile at all comments and say thanks. That's all I can do, but be sure to know that my teeth will be gritted against every compliment, as I will never know whether it is for real.

I wish it was just invisible and not a thing.

Contemplating surgery.

I have been forcing myself to think more about surgery because it's frankly just a bit weird that I'm not worried about it. It's like I have this ability to just cut it out of my thoughts and although I know it's going to happen, it just doesn't seem like it's going to happen. I can totally ignore it. I don't think this is very healthy as it all needs to be processed at some point and I don't want a big crash just before I go in.

So I've been forcing myself to actually think what it might be like. Not too pleasant really.

It's been easy to fixate on my cutting of hair, and calling the carpenter and such things, why is it so hard to be honest with myself about being terrified?

Mostly what I'm worried about is the moment they wheel me away and from then on I'm on my own. Even thinking about that makes me feel alone, right next to Olly, he's just there - but I'm on my own in this and there's just no choice, I have to do this - on my own. It kind of makes me hyperventilate a bit just thinking about that no going back moment. I remember it from my nose operation but I think this will be worse. Trying so hard to be fine, and not hysterical and a nuisance patient but at the same time being so utterly alone. I don't really want to have to do that.

That's one bit - the before. Mum says I can ask for drugs to help me sleep the night before in hospital so hopefully that will be great. Not sure I'd sleep at all otherwise. And then I won't know anything about it - I'll be totally unconscious and blissfully unaware of anything going on in my head. The others will have a terrible day stalking corridors and trying to occupy themselves. I really don't envy them that but I am a bit relieved that I'll not be aware of anything until I wake up.

And then there's the waking up. What the HELL is that going to be like? Well firstly - it's going to hurt right? You can't really have someone cut open your scalp, saw into your skull, take a lump out (easily or with some difficulty), screw it and sow it all back up and have it "not really hurt". I really am not good with pain, so I think this is my major source of denial. I just can't understand what it will feel like and it's the whole unknown thing that is getting to me I think. Yes, it will hurt - but will it be tolerable? And what will the side effects be? And how long will they last?

What if I can't speak, or see, or move my arm and leg? What if I can't get to the toilet? What if it's so bad I have to stay in hospital for ages? I know - I KNOW - this is all really unlikely, but it is a possibility that I should contemplate. And not knowing how it will be is really the problem. I just can't prepare myself for something that is so up in the air. The only thing I can do is have the operation and see what happens. This is a whole new way of life for me - "see what happens". 

Gahh, anyway, I am starting to think about it and although it brings me out in a panic each time I do, I think it's good to try and get my head round it. Now I have a date, and a list, and a bit more strength I think it's definitely time to start dealing with it.


*Little clarification, I haven't had a nose job! Had to have my nose put back in the middle of my face after a rounders incident when I was 10. About a half hour operation but with a general anaesthetic it's my only source of experience for this. Mostly I was traumatised about the length of the gown they made me wear to theatre, they only had baby ones left which didn't quite reach my waist. And they're backless. And you're not allowed to wear pants. This was very disturbing and I clearly haven't quite got over it yet.

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).

An official letter from the hospital. Eeek.

A letter has just arrived. It's the first official communication I've had and it was a bit scary, but also a bit of a relief. This is actually going to happen, and maybe I'll stop wondering now when they're going to call up and say they made a mistake. There's nothing there and we got the wrong scan. Unlikely.

So I have an admission date, which I've accepted, and it's less than two weeks away. Action stations, what do I need to do? I don't think I need to do anything but am fluctuating between panic of oh god, so little time, and jeez so much time how will I entertain myself?

I think confusion is the name of today's dominant emotion.

When I called back to accept the date I found out that I have an admissions appointment on Monday at King's so it's lucky I checked as I didn't know that. It will be good to go in and actually speak to someone as I've not really had any word since the ward round before I left hospital. And I wasn't really in a good frame of mind to be asking questions at that point.

Scary malary though. This really is going to happen. Just can't get my head round it, still in denial.

And with all this going on, I'm still slightly irritated that I'm going to have to move the appointment I made with the carpenter on Monday morning. What is wrong with my brain (not even joking) that I always fixate on the truly unimportant things?

A wobble.

Had another wobble today. After a lively morning of visitors everybody left at once and then I watched a chick flick film, which predictably set me off.

All that kept going round in my head was "I don't want to have an operation". Luckily Oliver came home and snapped me out if it but I guess it's actually a good sign, as well as a bit of a relief, that my denial might finally be crumbling a bit.

I didn't get any sleep last night so I'm sure that didn't help.

TIme to address the subject of hair.

So. Vanity. I've been struggling with this one. Given the choice, what would you be worrying about more?:

1. complete strangers sawing open your skull and rummaging around in your head trying to remove something stuck on your brain, or
2. what you'll look like with a shaved head

Hmm, tough call. I'd like to say that it's because I'm just avoiding thinking about the surgery but I'm actually pretty sure that it's mostly down to vanity. And possibly control.

I shaved my head when I was 18, and to be honest it was probably more to make a statement than anything else. But the thing then was I didn't really care, I was going travelling, it was hot, I could wear a cap at all times and it grew back in a funky way while I worked as a volunteer in Brixton, where clearly noone gives a shit.

But I'm mid thirties now, and could really do with keeping my job and being taken seriously. Logically I know that it will be fine and everyone will understand and I'll not be judged or anything but I just can't shake the feeling of violation.

I use my hair as camouflage. I can make it curly, or straight, or neat and businessy, or messy and cool. Or anything I like really. But when it's shaved off there will just be my bumpy skull, no padding or hiding or chance of deflecting attention. It will be a big beacon - Look! Ill person!

Olly had bought me a really nice scarf though, in case it gets really cold.

The other thing about the hair is this control thing. Everyone has theories on what I should do and when, but I think I'm going to just stick to my guns. With the tumour being right at the top of my head they will need to shave a big circle off the top. If I don't cut the rest off I will look like a monk. The entertainment value of this I believe would be short lived. And I can't be arsed with the combover thing, I am folically challenged enough as it is.

So, I want to cut it all off. Now. And just get it over and done with. If it's already gone then it's something I can stop thinking and wondering about. It won't be an extra deal when I wake up from surgery. Well, I spose it will but it won't be as much as I'll have already got used to it being short. But something is still stopping me, it's such a big thing. Think I'll do it at the weekend.

Alone. At last. But luckily not for long.

Just realised this is the first time I have been truly on my own for absolutely ages. Olly is at work and mum's in college. Neville is here ovvo and in fact I know that both Beka and Laura and Sarah are on their way - but the solitude is actually quite nice. To think I was worried about everyone going back to normal life without me.

I'm glad Olly is at work again.

It did take me a good while to drag myself out of bed though. I spose that's easier if there is someone else here.

Late night ramblings.

One funny thing is the way I feel completely outside of real life. Not necessarily in a bad way - just in a parallel kind of way.

Over the weekend I really wasn't looking forward to Monday when everyone would go back to work and college, and I would still be on the sofa. Kind of like everything carrying on without me, and me not having a point or a purpose. But actually Monday was fine. I wasn't bothered about the work I was missing which was a surprise but also a relief. I have let go of it so completely that I wouldn't be able to pick it up now anyway.

But it is odd to think of everyone still carrying on when the course of my life has (temporarily) changed so fundamentally. I think I might come to struggle with it later but now that the surgery date has been brought forward, two weeks does actually seem quite manageable. 

Post surgery of course is a whole different matter as I'll have something to work towards (being better) (and getting back to work). This limbo space is the weird bit, not quite well enough to go to work, or care about work even, but not quite ill enough for time to just pass. Obviously this is manifesting itself by mental head thoughts going round and round and getting all twisted together. I think maybe it's bedtime. 

Busy day tomorrow, visitor fest. Might even manage to have a wash and put some non pyjamas on. Don't count on it yet though.

Definitely feeling better.

Just found myself having a little sing. Things are definitely looking up.

Time for a bit of reflection.

I've been quite antisocial for a few days, can't quite put my finger on why but I've been ignoring emails, phone calls and skype calls, preferring to just let Olly deal with everyone. It's annoying because I don't want to be rude and I certaily don't want people to stop calling or coming around, it's just easier to hide away and not see anyone.

I think I'm feeling better today though, and actually when people are here it is fine - it's more the thought of it, or the thought of the effort.

I've also been spending a bit of time trying to understand my own thoughts about whats going on and my reactions to it. It's interesting that I am so exhausted when nothing much has really changed. I'm on the steroids of course, which everyone agrees will be havng some sort of effect, they just can't agree what that effect is. Some say they will make me lively and stop me sleepng, some that they'll wipe me out. Either way, I am v tired and I can't tell if it's the drugs, psychological, or sheer laziness now that I have an excuse to get everyone to run around after me.

An interesting thing happened yestedray, we'd been watching an eposode of Breaking Bad and when it finished I got up to go the loo. Momentarily I completely forgot about the brain tumour and fair sprinted down the hall. Then I remembered and was completely overcome with immediate fatigue - how does that work?! I have always had to push myself to not be lazy, I'm just hoping that I'm not going to take this opportunity to turn into a heffer.

I think I am feeling better today, better in myself, as in more normal in myself. I have a bit of a headache too, which actually is making me feel normal! Ridiculous that this is what it's come to.

Also, I'm back to feeling lucky. I don't like the word blessed, I guess because of the religious connotations, but I was reading a forum about head surgery (ill advised in my position) and someone had written that they felt blessed and it immediately struck a chord. The way that people have rallied around me is incredible, quite moving as well as humbling. I am so lucky to have the friends that I do, and family - and Olly's family - it's just a whole other level. I must take this for granted all the rest of the time as at the moment I feel physically bowled over by the concern and affection people have for me, and for Olly and for the whole situation. 

And everyone keeps saying that we're brave. I just don't see it that way, it is what it is, we don't have a choice and we just have to go with it. I guess if it was the other way round I would think that too - very strange how situations change when you're in them.

After a sleepless night.

Having a bit of a downer at the moment and I'm not sure why.

I can still see all the positives, and still feel really lucky. Just feel a bit aimless too. I'm crying in bed while Olly's asleep and I don't even know why. I'm easily distracted by playing a game but then it just starts again when I finish.

It's made me look at my life and see how great it is. I couldn't be in better position. I have found the best person in the planet and he wants to be with me, I still can't believe my luck. I have a great job that is challenging and well paid. We have a beautiful house and the most amazing supportive friends, and don't get me started on family. I just can't believe how I've landed so well on my feet.

So why am I crying? It's ridiculous.

Something I wrote in hospital. Bear in mind I was on a lot of drugs.

You know how in american films when they tell you medical bad news the doctor is always sitting across a big desk with a lamp and a file of papers? You know how they broach the subject gently, even in uk films, and Casualty?

This has been a different experience really. Not what I would have expected.

I have gone from thinking:

• "an ambulance? This is a total waste of resources"... to 
• "a stroke doctor? Now you're just taking the piss"... to 
• "oh, um this isn't good, is it Oliver...?"... to 
• "a fucking tumour? Brain surgery? SHAVE MY HEAD?"

Looking back its only been 18 hours since we saw the GP with a migraine, although it feels like an age. The one thing I will say is how brilliant the NHS is. It's brilliant. The staff have all been brilliant. It's brilliant we live near such a brilliant NHS hospital. Well done King's.

I'm writing this on my second night on a short stay ward. There are four of us in a room and last night one of them screamed throughout the night; tonight it's the second ones turn. The first one has moved on to whimpering, having done a smelly poo and treated us all to a waft. The third keeps calling someone and explaining loudly how they are all keeping her awake. She's a particularly nasty character and loudly exclaims that she hopes they die in their sleep (they are very old). And she says cunt a lot.

The nurses have a lot to deal with. I cant believe how rude people are to NHS staff, like they're entitled to everything and can treat nurses like shit. It amazes me how theythink that's ok. I'm trying to make up for it By being extra nice.

Why.

I chose this name as it always makes me laugh. Sometimes you just need something to make you laugh and I have a feeling we're going to need some of those moments. So this is my new blog.


Last week Oliver took me to the doctors with a migraine. Before we knew it we'd been ambulanced to A&E, brain scanned and diagnosed with a brain tumour. Most probably benign but needing to come out. It was a funny two days, and the days since then have been odd too.

As I wait for surgery, this will be an odd collection of thoughts that occur to me.