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.

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.

The big sleep.

Finally! I slept for nine and a half hours last night, a proper night's sleep. Feel so much better for it.

I did a lot of walking yesterday (by "a lot" I mean two times twenty minutes, there and back to Sunday lunch, in the old days it would have been a stroll) so that may have helped. And being off the steroids definitely helps.

I slept so long that I almost missed mum going to school. We didn't have time for our daily morning inane chat. How will she cope?

Thoughts on being sociable.

I've noticed how draining it is being sociable. At first, it was the fact that smiling (and any other facial expression) pulled on the scar and hurt. It surprised me how much I smile in the course of general conversation. Laughing as well, that was frustrating, it really hurt to laugh. It was nice to see people during this period but I was always relieved when visitors left so that I could maintain a waxwork-like expression without being rude.

Now that the scar is healing more it no longer hurts to laugh and smile. But still it drains me to see people (who aren't family who I am routinely rude to anyway).

I think it's a combination of two things: one - the concentration needed to stay focussed on the conversation. My concentration is appalling, I can read books but only for five minutes at a time. Playing the drums is the same, I do it for five minutes and then have a little lie down. I can't focus on any one activity for long, even watching a film - I just lose interest.

Two - I realised I feel the need to pretend everything is normal. I have always been reluctant to be centre of attention, like being sung happy birthday to, and going into the office for the first time after a haircut. The first time I see people now, it's like I do everything I can to pretend everything is normal - so as not to be the centre of attention. And that's quite draining.

Although everything IS still normal, once you get past the "wow you've had brain surgery" and "I like your headscarf" lines. Apart from energy and concentration levels I'm the same as before. It is really good fun to see people and great to have normal conversations and remind myself how things can be, but it knackers me out. An afternoon on the sofa beckons.

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.

Warming to the headscarf.

Since we've had internet back I've been watching a whole heap of videos about potential head coverings and how to tie headscarves. Also, mum found a stash of headscarves (and I have been buying just a few - how cheap are silk scarves on ebay? It's getting dangerous now) so I've had more styles to play with.

I think the problem with the one I wore last week was size - it's a massive scarf that just ended up with a huge knot which got in the way. I've got a few small squares now that are simpler to tie and fit perfectly around my head. (I have a deceptively small head - which makes my cheeks look even bigger - when we went racing at Silverstone I had to have an extra extra small helmet, they were shocked).

They are also more my type of thing, I got a brilliant one today in grey army camouflage - not girly at all. So I'm warming to the headscarf, I just had to find the right kind. And know how to tie them properly.

I also found a load of videos about alternative head coverings, like cutting up old T-shirts  This sounds weird but actually looks brilliant, except I now have to convince Olly that he doesn't need a T-shirt so I can try it.

But the best thing I've found so far is a bonnet designed for Muslim women to wear under a hijab. It is perfect for me as it is just a tube of material - easy to put on and I tuck it into itself at the back. It's stretchy and comfortable so doesn't hurt my frankenscar, and it's perfect for sleeping in to stop me itching by accident. Gah the itching is driving me mad.

I definitely recommend the bonnets to anyone in the same situation as me. Just google hijab bonnet, they're also really cheap.

An alternative holiday.

We were supposed to be going on holiday today. Our non flexible non exchangeable non refundable Eurostar tickets are in fact exchangeable if you can prove you've had brain surgery. Which I have, and I can. That's a turn up for the books. So we can change the dates to any time in the next 120 days, which will be something to look forward to. Thank you Eurostar.

Instead of going to Paris today, we went to Brixton. For lunch. I bought some new headscarves (I am going to be so easy for Christmas presents this year), some bowls, a dish draining rack, a lead and an adaptor for the drumkit, and a pizza. Good haul.

Then a got my wobble on and had to come home. Standard.

In my bubble.

Late last night I read a blog written by someone who'd had something similar to me. Mum had found it, amongst others. She has basically triaged them for me and she thought this one was worth reading.

Up until now, I haven't read much. In fact I realised I'd been actively avoiding it. Plenty of people have offered to put me in touch with their friends that have been through this, but in every case I have found a way not to. It dawned on me that I've been avoiding that too. But why?

Before surgery, I didn't think it was worth talking to someone as each case is unique. The logistics and outcome of the operation are dependent on the location and size of the tumour, I thought. So someone else's experiences wouldn't be relevant.

In fact, I think I just didn't want to know. Hearing more details would make it more real and looking back, I was struggling to prepare mentally for surgery. I don't think I could have coped with it.

But now, surgery over, why am I still so reluctant to hear other people's accounts, or meet up with fellow post-craniotomy patients?

Once I started reading this blog last night I carried on until I'd finished the whole thing. It was mad. There were so many similarities and much of what I read felt familiar. But it also made me feel uncomfortable, reading someone else's account. And I think I've figured out why.

Being a younger sibling, there has always been something to compare myself to, and a feeling of expectation to be met. It was much worse when I was growing up, in fact I don't think it applies anymore, but as a second child the bar has been set before you. To compare you to.

I think this is having a similar effect on me. I don't want the pressure of knowing where I should be in my recovery. To be comparing myself to other people's stories, and coming out worse. It seems ridiculous and petty now I've worked it out.

Also, I'm shy. I have to push myself to be sociable and I'll take any excuse not to meet people. Brain surgery is a great excuse to be antisocial.

At the moment it feels like I'm progressing well, but in my own little bubble. Even writing Henrietta is something I can safely do from the comfort of my preferred solitude. Maybe it's time to pop it and start engaging more. With the community of people who have been through something similar, as well as with everyday life. Something to think about anyway.

A wake up call.

Up until yesterday I had been feeling really exhausted for a while. Not just tired but physically unable to hold myself upright. I was sleeping about 20 hours a day and it was a totally new experience. Frustrating in one sense, but I figured my body needed it and would be healing better if I was getting so much rest.

Then yesterday I suddenly felt better. We went for a short walk and it was great, I realised that I felt like I could drive - I wanted to drive (gah). This was major improvement, I'd not felt like this since before diagnosis. I felt able to concentrate enough, and able to take in enough information that I would be safe to drive. I felt like me again.

So this morning, when I still felt the same way I was excited. I'm fine again! When can I go back to work?

After the BT engineer left (hurray, he fixed the internet!) mum and I went to Marks and Sparks on the bus. Super exciting. It's about 10 minutes away from a bus stop just at the bottom of our road, so hardly an expotition to the North Pole. We got off the bus and looked in one shop, then walked next door to M&S. After 10 mins of messing around trying stupid hats on, I suddenly crashed. I started shaking and needed to sit down, fast. It came on so quickly. Mum said I'd gone a funny colour. 

Obviously we went home then and for the rest of the day I have been SO tired. It has been a bit of a wake up call, it has shown me that I'm not quite as recovered as I thought I was. In fact I had lasted just an hour outside the house, and it has shocked me how bad I felt. And how quickly it can come on.

I think I needed that to happen to make me realise that a full recovery isn't possible in two weeks. I need to stop thinking that I'm back to normal the second that I feel ok. Also, it would be a good idea to carry a little Wispa with me everywhere I go - just in case.

Rocking the disco sticks.

Last week, I got another awesome gift (thanks Ralph) - some disco sticks! They are gold shimmering drumsticks, and oh so cool. For some reason Oliver prefers the plain old wooden ones, but my disco sticks give me extra drumming power. They have spurred me on to start playing.

Already I have seen some improvement (although seeing as I couldn't do ANYTHING to start with, it wasn't hard. My arms and legs just wouldn't do what I wanted them to - it was very odd). Olly has been setting me exercises, but I haven't really been practising very much. I try something for a little while, struggle with it, walk away in disgust and then next time I try it, it works! It's very strange.

Without headphones or speakers it just sounds like a dull thudding, and I'm looking forward to hearing it sound like a drumkit.

Mission for today: buy an adapter thing so that I can plug headphones into the drumkit. You know, to make the headphone plug into a fatter one. I think that's the technical term for it.

Drumming is actually better for my concentration, rather than exercise. I need to really concentrate to keep it going, and it's so absorbing. I love it, specially with the disco sticks.

Also, the tinterweb has been fixed! Hurray. I have a backlog of videos to watch about drumming and tying headscarves so today is going to very busy.

But we have no hot water now so we've effectively swapped one service for another. I'd rather have the tinterweb but I think mum would like some hot water for a shower...

How can I help?

Yesterday was extraordinary. Weird thing kept happening after weird thing, and many brilliant things happened as well. It was such a good day.

(Way up there was our new bin being delivered from John Lewis. It has a fancy lid that opens when you press it. This is very exciting.)

I am feeling really positive and lucky at the moment that I've started to look at ways to thank King's. When I was in hospital, particularly the first time, I was simply amazed (not in a good way) by the way people treat nurses and other members of hospital staff that aren't doctors. I can't imagine what they are expecting that would make them feel so let down, to behave in such a way.

Such aggressive language, I just don't understand why they thought it was ok to treat another person like that. And it wasn't just one person, it was everyone, even visitors. Just astounding.

At the time, I thought I would like to do something about it - but had no idea what. So I've been thinking and it's got me all worked up.

The first ward I stayed in was a short stay ward mainly for people that had been admitted through A&E. The people that I shared a bay with here were among the rudest, nastiest and ungrateful people that I have ever met. I was ashamed for them. I was ashamed of myself for just standing by and watching.

The second time I was admitted, was to a specialist ward for people recovering from some kind of neurosurgery - we'd all had either head or spine operations. Clearly the patients here had more to be thankful for, and they were as you would expect, less rude.

But that didn't stop them complaining and moaning. Run out of Weetabix? Don't serve WeightWatchers branded soup? Dear lord, call the BBC. Had to wait two hours before an ambulance was free to take you home? But you still got taken home! To your doorstep, by an ambulance - what are you complaining for? It really got to me.

Argh.

So I've had a pie in the sky idea: I want to do some research. I want to find out why people feel so frustrated and let down by the NHS. What do they think they are entitled to? I'm really interested to discover what they're expecting. Finding out where the perceived failings are will point out where to change the messaging, to manage expectations. Maybe just explaining how something works (ambulances aren't just hanging around waiting to take you home...) will make people less angry.

But research is expensive and I have no experience or background in it. Even if I did, I'm sure I wouldn't be allowed to go around just interviewing people. It would need to be centralised, and that would mean someone central caring about the NHS and it's reputation and future. Huh.

As a first step, I've applied to become a member of King's College Hospital Foundation Trust. We live so close to the hospital that it seems like such an opportunity to volunteer and bring some value to people. Hopefully I can at some point get involved at a deeper level and scope out the right people to put my idea to. It's a start anyway, I hope they accept me.

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.

A goal in mind.

They told me in hospital that it's good to have goals to work towards, as a form of motivation to recovery. I kind of went "yeh yeh yeh, let me go home" and brushed them aside as I felt I had no shortage of motivation.

I think they meant physical achievement goals, like getting back to jogging, and playing the drums - but my favourite goals are about experiences. Like the fireworks night at Brockwell Park, originally my surgery date was the 2nd November - the same day as the firework display. Obviously there was no chance of me making it then, but even when the date was moved forward, it seemed unlikely. There was half a chance I would still be in hospital, and I wasn't sure what I would be able to cope with noise-wise... fireworks are loud.

But I made it! I was really proud of myself. I was determined to at least try, but walking to the bus stop totally wiped me out so I started to think perhaps I wouldn't last. When some scally started playing music out loud on the bus, we had to get off. Things weren't looking good.

In the end it was the thought of donuts that kept me going. We had a really good time and once we were there I was fine. It was good to be out doing things again, together, albeit in a slightly different (and more subdued) way.

I paid for it the next day though, I couldn't get out of bed. I was exhausted, beyond exhausted. I have never run a marathon but I imagine that's what it feels like the day after. I was bruised! But it was worth it - for the sense of achievement as well as the brilliant time we had.

So, it's all about balance once again - I should still do the things I really want to do, but be aware that I need to schedule in recovery time. And I may feel a bit rubbish afterwards.

Which leads me to tonight. Am so excited. Not least because I thought this would be something I was sure to miss, but given I came out so early it's back on... yey!

Jake, my brother-in-law, is playing at Shepherd's Bush Empire. It would have killed me to miss it, I pride myself on being a true fan and have seen Jake play all over - but this is massive, Shepherd's Bush Empire!

It's a brilliant goal for me to have. Firstly, obviously, I want to be there for the experience - it's something I really want to do. And secondly it's a goal that will make me feel like I'm part of the real world again, doing things that normal people do. Even being out and about will contribute to that. And I have the feeling that if I don't make it all the way through, it's the trying that counts. Being motivated to give it a go in the first place.

We're planning a military style operation to get there early and scope out where to sit. I am worried about noise mainly - crowd noise and background music in the run up to the acts. Worst case scenario I show the bouncers my frankenscar and ask if they can let us back in at the last minute. Gah am so excited.

Watch this space.

Actually watch this instead, hope he plays it tonight it's my favourite (after Freddie of course).

Pavement terrors.

I can see now why people get scared to go out, and used to being in their own home. Yesterday we went to the Brockwell Park fireworks. (It was awesome - I love fireworks. And we had donuts - I LOVE donuts, the ring ones with just sugar on that you only get at fairgrounds... hmmm).

I have been going to the grocery shop every now and then, or to the doctors surgery. But this was altogether busier and darker and much more scary.

Children are terrifying! They're so unpredictable and change direction at the drop of a hat. My legs aren't working properly at the moment and it feels like I'm wading through treacle just to walk, I'm so exhausted. Changing direction is something I need to work up to, and stopping and starting. So walking down a packed pavement suddenly becomes a high alert situation.

It's frustrating being overtaken by someone two foot tall. I kept causing blockages in the packs of people trying to get home, and that only added to the stress.

And it made me envious of all the energy everyone else had. People were out jogging, gah - when will I be able to jog again?

In fact it has spurred me on to get better, but it made me think about how vulnerable I felt. And all the other people that must feel just as vulnerable. I will look out for slow moving people in future - you just can't tell what's under their mystery hat, causing them to move carefully and slowly.

Nothing.

It's been easy to write so far. I've had things I want to write about, but I knew this would happen.

When I'm feeling down I generally just go into hibernation until its over. Then write about it briefly, no one wants to read about being down. Least of all me. There's nothing to write when you're down.

But, in thinking this in the early hours of the morning (when I write in my head for later), I realised there was in fact a point to writing down that I had nothing to write down. Firstly to log it and remain true to why I am doing this. And secondly to look at it objectively.

Then I had something to write about, and immediately I feel better.

Why am I down? It just doesn't make sense. But then when I think about it there are reasons: I feel exhausted all the time and it's frustrating. I feel guilty and dependent for everything that everyone's doing for me. I'm covered in weird spots, as if I don't look like a freak enough already. I'm bloated and uncomfortable. And I feel guilty for feeling down.

Which leads me on to why I'm still really lucky. Nothing has changed, I just had a bad day. Not even day, couple of hours. To be expected. And just like that, I've typed my way out of it.

Feel better now.

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!

Driving licence: surrendered.

It's gone. There was an almost comedy moment as I let it go in the postbox when I didn't want to. But I can't drive anyway, I just don't have the concentration.

Feel a bit sad though, I like driving.

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.

Symmetry of time.

I went on a course once about personality types, and was identified as a type of person who remembered dates. I've been thinking about dates a lot recently, and the weird symmetry of time.

It was a year ago yesterday that Oliver and I decided to get married, over Sunday lunch. It was such a good decision, and Oliver was on Jen-sitting duty yesterday, that I think that set me off thinking about the year we've had. It's been a great one, 2012. We've done some brilliant stuff and this is just a weird part of that.

It was a year ago today that I started my new job at Pearson. I feel quite bad about the fact I hadn't yet been there a year when this all kicked off, and they've looked after me so well. But it is a marker of the passage of time.

And then there's the whole tumour business. It was the 1st October when we went to see the GP (I remember asking Olly to send a pinch and a punch email to Tristan as I knew he was away and would forget. It made me laugh through the pain). Before then, we had no reason to believe this was anything more than a bout of migraines, it was less than a month ago.

Today is the 31st of October, I am taking the last of my drugs today and having the stitches removed from my head. It will all be over by 6:15pm tonight.

October 2012: tumour month.