Two monthiversary.

Two months today. I thought it would be worth writing a little about how things are going, seeing as it's a bit of a milestone.

In some ways it doesn't feel like two months can have possibly gone past. In other ways I am a different person now, it was a lifetime ago. Thinking about the week after surgery makes me shudder. I can now remember things that I must have originally blocked out of my mind, painful and nauseous things. It's not nice to remember, but it's good to compare and see how far I've come.

Christmas is here and along with it plenty of seeing family and friends. It's great that I am not the headline news anymore - we have all moved on. It was a massive shock when it happened, and the legacy is still rumbling in the background for me, but there has been a shift in the last few weeks towards normality. I think not writing Henrietta has helped me move on too.

As I get ready to go back to work, the main thing worrying me (surprise surprise) is my hair. Why won't it grow faster? I had it cut this week, and it actually looks much better than it did, but there are still huge shiny bald areas over the scar. Which is disturbing for anyone taller than me.

The only pain left is scar pulling, but that is getting less frequent. In fact I've started to get some movement back under the skin, thanks to massage. And that is encouraging as I wasn't sure if that would come back at all.

A good thing is that I have had a date through for my next scan, in early February, and I'm really looking forward to it. I want to see the space where the tumour was. Will there be brain? Or a gap? A bit of both? I guess it will be proof to me that it has actually gone...

So that's it. Back to the marathon eating required of Christmas. Have a good one everyone!

Bearing all.

We're on holiday at the moment so I took the opportunity one day this week to be bare-headed in public. Just to see what it was like. It's seemed easier here, where I was unlikely to bump into anyone I know.

It went like this: we stopped for lunch at a little chinese restaurant in the centre of Brighton; we were pretty chuffed to be seated at the best table - a booth; I tentatively removed my hat and we ordered. Then we noticed the mirror.

I was sitting directly underneath a slanted mirror, on the underside of a staircase, that was effectively reflecting an image of my scar to the entire dining room. That's enough to put anyone off their food.

Typical.

Initially I was hyper aware of everyone's expressions as they looked at me, trying to second guess what they were thinking. But I did relax after a while. Later, when we were in a pub with yoofs all around, I did get a bit more self conscious but then the alcohol kicked in.

It's only going to get easier.

Reflection reflections.

I've been really self conscious about having no hair, as is probably obvious from this blog. But yesterday I started to feel better about it.

It seemed like such a violation to go from long hair to literally none, so I cut it short first. That style felt very alien, and not like me at all. But it was a strange time as I knew I had about a week before it was all going anyway. And I had bigger things to worry about...

Then when the bandages came off after surgery I was so glad it was over that I really didn't mind about the lack of hair. It looked ok at that stage too, and the plasters were still on - hiding the scar.

Recently I've been struggling more. Olly shaves his head every few weeks, and has done for as long as I've known him. Sometimes I do it for him. He takes for granted the fact that his hair grows normally. He has a normal hairline, his hair grows evenly over his head with no thin or thick patches, and nowhere can it be seen grown horizontally along his head clumping in an unnerving manner. Also, he doesn't have bald bits around a crusty red bumpy scar.

Lucky Olly.

I've struggled with the dilemma of what to do when someone knocks on the door. It's not a pretty sight, and really quite scary I imagine. When I'm in the house I generally walk around with the scar out, so the air can get to it. When someone arrives, the choices are to manically pull on a headscarf (which isn't an easy or quick job) whilst shouting at visitor to wait... not ideal, or just brave it naked-headed.

After an episode with the man from British Gas, who couldn't stop staring at the scar in the manner of teenage boy (or pervy grown man) who talks to your chest instead of your face, I try to make sure I have a scarf by the door. Sometimes though, I just can't be arsed or there isn't enough time, or I can't find a scarf. Nobody has actually said anything or seemed uncomfortable. Except me, I am horribly self conscious.

It's quite depressing having to just accept that you look strange - to yourself. I don't look like me, and that is a really weird and horrible feeling. And if I think that what must everyone else think?

Yesterday, for the first time, I caught sight of myself in the mirror and didn't recoil in shock. I've become quite good at just blocking that feeling out, "who the fuck is that in the mirror...? oh god, it's me". I just push it aside as there isn't anything I can do about it. For the first time though that didn't happen, and again this morning after brushing my teeth.

I've thought about it and it could be for any of the following reasons:

1. I've just got used to it, so it's no longer a shock;
2. My hair has grown back long enough (in some places) to balance out the massive cheeks. I've been used to seeing my head with a certain volume around it in the form of hair (oh how many hours I used to spend working on that volume), and without it the ratio is off. My cheeks are way too big in comparison;
3. My cheeks have shrunk. Mum thinks that the steroids made me puffy (not moon-faced, shudder) and that effect may have finally gone.

Anyway, something has changed and even if it's only my perception then it's a good thing.

And another thing...

Forgot to mention this in yesterday's post.

The scar is three sides of a rectangle (two short sides and once long side), which they opened like a flap to access my skull - sorry if you're squeamish. It's really odd how the middle of the rectangle has gone numb. I can feel it a bit, but only just - like it's through several layers of thick material.

What makes this interesting is when my head is itchy. I can't feel when I scratch it, which is really frustrating as the itch never goes away. It's a really odd feeling.

Just thought I'd mention it.

Scar musings.

This week I noticed something weird about the scar. I guess it isn't really that weird but I just hadn't figured it out before.

Up until now, the scar itself hasn't really given me much pain. [Side note: the most painful thing throughout the whole experience, apart from the initial migraines, was the cannula in my wrist when I woke up from the anaesthetic. The massive needle was visible under my skin for over an inch and it wrecked! It still hurts now when I wear a watch.]

I was lucky - with the tumour being right at the top of my head I've had it easier than some. Not least because it was easy for the surgeons to get to, and the scar will be well hidden when my hair grows back. But also day to day it has been easy to not disturb the scar - I can lie down without squashing it, so can sleep without any pain.

I heard somewhere that some nerves are severed during surgery, and with no pain receptors inside the skull, its normal to not have much pain with head surgery (relatively).

For the first week the scar was covered up, and I didn't touch the plasters at all as I was petrified about infection. The woman opposite me in hospital was five years and seven operations into rebuilding her skull. Her tumour was removed without complication, but her scar got infected during recovery and I really do not want to go through the ensuing hell that she explained to me in minute detail. So I was doing everything I could to not touch the plasters or the scar. With anything.

Contrary to what I was expecting, having the staples removed didn't really hurt either, weirdly. But the process left the scar exposed, and I found myself absentmindedly itching it now and again. That hurt - I never did it for long.

And then the itching kicked in for real. It lasted about three or four days and was total torture. But it still wasn't painful exactly.

As the weeks have gone on, the healing has improved the look of the scar. It's no longer encrusted with blood, can't really call it a frankenscar anymore. In some areas it has completely healed over already, but in others the skin doesn't seem to quite line up and it's really bumpy. I'm hoping that will improve over time as it looks and feels weird. And brushing will probably hurt (when I have enough hair back).

So overall the scar really hasn't been that painful, until this week. On Tuesday I spent the day driving around in a van (obviously I wasn't doing the driving), and noticed it hurt to rest my head back on the headrest. On closer investigation I realised that the skin on my scalp doesn't move under the scar. Along the length of the scar it feels solidly attached to my skull underneath - there is no give. How had I not noticed that before? And will it be like that forever?

The centrifugal force of going around a corner had been making my scalp move against my skull. Normally this wouldn't be a problem, except where your scalp is effectively glued to your skull and won't budge. It bloody hurt.

So, word of warning. I have no idea if this is normal but it you've had a craniotomy then don't lean your head on a headrest when going around corners in vans. Oh yes, or over speed bumps.

Itchy itchison.

My scar is itching. I can't think about anything else, so that is all today.

Hair wash time.

I feel it's only right to keep banging on about my hair. In case you were wondering.

Over the last few days a lot of the dried blood has come off the scar and my hair has been growing at an alarming rate. Actually, some of my hair has been growing at an alarming rate, the rest of it is just growing quite slowly. One side of my head has entered that tricky stage - it looks like a fluffy chick, Olly says. The other side hasn't quite got there yet. I'm not sure what's worse - looking like a fluffy chicken all over, or having uneven hair.

Having not washed my hair for two and a half weeks, it was getting a bit manky (erm, understatement of the century). When the stitches came out the nurse sprayed silicon spray all over to get the massive plaster off, so that didn't help. But I have been seriously looking forward to washing my head, although slightly nervous of how much it would hurt the scar.

Last night I leant over the bath while mum finally washed it. She had bought some stuff to use that is gentler than normal shampoo (although doesn't feel or smell like shampoo - in fact it isn't shampoo but it is antibacterial, which is the main thing) and she could see the scar and where to go carefully. Everything seemed fine, so today I'm going to wash it myself - in the shower! A proper shower!

I realise that I'm writing this after 3pm and have just admitted that I still haven't had a shower, but I had a very busy morning, snoozing.

Crap, it's after 3pm and I haven't gone to get my passport photos done yet. Maybe newly washed hair will make the photos better. Rocking the half chicken look.

The disappearing frankenscar.

After everything I've been through, you'd think I would at least have the satisfaction of picking my own scabs? But no. Firstly there's the risk of infection, so I can't even touch them. Then there's the fact that I can't actually see them, and then there's living with a doctor mother who picks them for me. Under the guise of "cleaning".

Bah.

Anyway, the result is two and a half weeks on, the scar is looking much less bloody and far less gruesome. Also my hair is growing back, it's now half a centimetre all over - although lying down in all funny directions so it looks really patchy. Soon though, you won't be able to see the scar at all. It will be like nothing has happened.

Headscarf schmeadscarf.

While my scar is still healing I can't get it wet. Which is fine, that's exactly what umbrellas were invented for and it's much easier to keep the top of your head dry in a shower than, say, a knee. Although I am looking forward to a proper shower.

But while it's still crusted in blood and so visible, it doesn't seem appropriate to walk around in public with the frankenscar (©Bournie 2012) showing. Cue head covering debate.

At the fireworks I wore a woolly hat (who sent the mystery hat?!), the same as everyone else so I didn't stand out - there's one positive to winter. But once inside, most people take off their woolly hats, so I need to have something on underneath. To minimise screaming and running away from me.

Last night was the first such occasion, and I was quite nervous. It can't come as a surprise at this point that I was worried about how my head would look. This was the first meeting of people outside my house, and that seems to make a difference. What would I wear on my head?

The options were:

1. Woolly hat and don't take it off - my preferred option but most socially unacceptable. Also, it may get very hot, and the person behind me may not be very happy to watch a gig past a massive orange bobble.
2. Woolly hat with scarf underneath - tricky to get the hat off while keeping the scarf in place, and who knows what the scarf will look like when you get there.
3. Headscarf only - although that isn't possible as my hair is like velcro still, so I have to put a scarf on under the scarf to allow it to sit right, it's a complicated business. But this seemed like the best solution.

Argh, I have always been envious of people who can accessorise successfully. You see people who look like they've just thrown on a massive necklace and artfully tied a headscarf as they run out the door. I have spent hours trying to achieve the look, and that was before. 

*Unrelated rant alert*

Also at the moment we are embroiled in a "negotiation" with BT. Our internet connection keeps dropping so they've capped it to 200K. Yes, 200K. There is an engineer coming on Wednesday, apparently, to fix the dropping but in the meantime we are limited to one webpage at a time, as long as it has no images on it. There are three people living in this house, all with high internet expectations. Mum can't read her course work, Olly can't watch his chess videos, and I can't do ANYTHING on the internet that I used to spend all day doing. It is very irritating.

*As you were*

At the moment (for reasons I won't go into...) I can't scour the tinterweb for instructions of complicated headscarf tying, so I just made it up. That actually might have something to do with it. It was SO irritating. It kept spinning around on my head, and actually restricted my head movement so I had to turn my whole body to look at people. Which is difficult in a three way conversation with two very tall people. I nearly just ripped it off, but I didn't.

I wonder what I would do if I was a man. It occurred to me that once the scar is healed it is much easier for a man to blend back in, but it must be hard to find a covering for it during the healing process. 

Anyway, new solution needed. Possibly miracle scar healer and magic hair grower.

The scar is exposed.

Well, I'm glad that's over. As the appointment at the doctor's got nearer I got more and more nervous, but I was comparing it to waiting for surgery and it just felt funny - laughable - to be nervous. I think that will be a good tactic for the rest of my life, nothing is as bad as waiting for surgery.

It really didn't hurt having the staples removed. One of these days I'll actually believe someone who tells me something isn't going to hurt, but not just yet. There were 34 staples in total, they just looked like normal staples - sitting in my head. I'm glad I couldn't see what was going on, but Oliver took photos and I've looked at them now.

Although it didn't hurt I still got squeamish and had to stop to lie down with my feet in the air. I disappointed myself as there really was nothing to be odd about, but I suddenly went very hot and fainty. The nurse had to get me some water.

The scar is impressively gruesome: it's funny that it was Hallowe'en. There is blood, as you'd expect, but apparently it is healing well. It looks very bumpy to me, and very visible. I'm not sure it would be fair to walk around with it exposed (now it's not Hallowe'en anymore) until my hair grows back a bit more, I wasn't far wrong with the frankenstein reference.

Still, it feels good to have the plasters off and getting air to the scar will only help it heal faster. I'm looking forward to being able to wash it, although that will still be a while away yet. It does feel a bit more fragile, psychologically, without the staples in but I think I just need a bit of time to get used to it again.

And the winning number...

34! Luke Gannarelli!

I'm trying to decide whether to put a photo up as it's quite gruesome. Any thoughts? Rest assured, we all counted them as they came out - the nurse thought we were mental as Oliver took quite a lot of photos. But she also had a count to make sure.

Luke, I owe you a Twirl (I didn't keep a staple for you...) - congratulations!

Jenkenstein. On Jenowe'en

If only there was a fancy dress opportunity for someone with a whopping great scar across the top of their recently shaven head to walk around scaring people... I'm thinking of trick or treating tonight on the way back from the surgery - brand new scar exposed. I could make a killing.

I'm actually quite worried about seeing the scar. It was in most of my dozing dreams last night. Yesterday I kept looking things up on Google to do with staple removal and scars, then closing the window before they had chance to load. (That's possible when you have such a rubbish internet connection that it's comparable to the dial up from a remote village in Southern India).

I definitely wasn't ready to see it before now, but some intrigue has crept in as well. But mostly I'm just worried that it will be not healed, and a mess. Maybe I'm just squeamish. It will be nice to get the plasters off and be able to see the shape of my head again. But what will the scar look like?

Think I'll be thinking about it most of today.