Friday, November 30, 2012

Feeling the effects.

Yesterday I read Juliet Jacques' last column for the Guardian (it was a great series and I will miss it, good luck Juliet!), and something she wrote immediately jumped out at me: "I no longer feel constantly aware that I have recently had a major operation".

I read her column about surgery just as I was coming out of my own operation. I remember identifying with a lot of what she said at that point, about energy, and being totally dependent on her parents again. So I've been eagerly awaiting this next column, it's sad that it's the last one but great too as it means 'business as usual' at last for Juliet.

I realised that I am still constantly aware I've recently had surgery. It's in the little things. I'm hypersensitive of anything that could touch my head. And bending down is still quite disturbing. Physically as well, although that is definitely improving, my legs ache all the time. When I get up from sitting down I feel like I'm 80 (or what I imagine it feels like to be 80).

And there's the constant reminder in the mirror too.

With the clicking in my head, I didn't notice when it stopped - I just realised it had at a later point. I wonder if that will be the same with this. I'll just realise one day that I am back to normal.

Thursday, November 29, 2012

The holiday dance.

It's lucky my arms didn't suffer muscle loss, as they are needed this morning for the holiday dance. We're going on holiday - today! We're going on ho-olida-ay, we're going on ho-olida-ay!

There. Just for old times sake.

P.S. If anyone has any recommendations for where to eat, drink and do (gentle) things in Brighton please can you send them to me ( or comment below? Thanks v much! Ho-olida-ay - WOO!


Since surgery I've been a bit disfunctional around noise. It's like my brain goes into paralysis and refuses to function until the noise stops. Rickety trolleys and car alarms are good examples.

It's got loads better already though. When I first came out of hospital I was really bad, couldn't cope with any type of continuous sound. It's great now I can listen to music and I'm ok playing the drums. When I am creating the noise, or it's familiar to me (hello Phil Collins), then I'm alright with it.

The problem is still there with noise I'm not in control of. Screaming isn't good. And anyone who isn't me playing the drums. Also any music that I don't know well - it's very strange, my brain can only cope with volume if it knows what's coming next. If it can sing along to it.

I have seen a marked improvement already though so I'm not worried. I'm sure it will be better soon. In the meantime, if you could keep your voices down... :)

Feeling unwanted.

Hmmm. Just realised I didn't hear back from the King's College Hospital Foundation Trust, where I applied to be a volunteer. It's been over three weeks - maybe I messed up the application. Or maybe they don't want me. Sniff.

Will call them today. Or tomorrow. Soon.

Wednesday, November 28, 2012

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.

Tuesday, November 27, 2012

What motivation?

It doesn't seem long since I was writing about how motivated I am. Drumming, exercising, learning programming languages... If I could be bothered I'd check exactly how long ago it was. But I can't.

I don't seem to be able to be bothered to do anything much anymore. It's like me and Neville are having a competition to see who can sleep the most (she can). I end each day with the best of intentions for the following day, but when it comes around I just can't drag myself out of bed.

Today it's grey and miserable and rainy and cold. Our bathroom is so minging that I've been avoiding the shower (handy excuse) so I'm still in my pyjamas - which makes it impossible to go outside. See my logic? Might as well go back to bed.

I'm not down or depressed or anything, just prefer to be in bed than anywhere else.

Monday, November 26, 2012

The results.

I didn't know for a while what I wanted to say about the biopsy results. I didn't know if I wanted to make it public. I don't want to be defined by this, and I don't want it to affect my career and I don't want any sympathy and constant questions about it.

But I'm getting that anyway so maybe this will help.

I hadn't put much thought into the results before surgery, looking back I don't think I had the capacity then to contemplate the options. I was too busy thinking about the possible side effects and risks of the surgery itself, to even think about the biopsy tests on the tumour.

The type of tumour I had was a meningioma. Over 90% of meningiomas are grade 1, benign. We were told the pattern of mine (visible from the MRI scan) suggested it had grown very slowly over a number of years and was therefore most likely to be a grade 1. After that, I didn't really think about it.

The results came back very quickly, within two days of the operation. The news that my meningioma was indeed grade 1, and benign, was very welcome. But. It was pretty much on the border of being a grade 2, atypical, which means that although still benign, it is "likely" to grow back. They were clear that if that happened, the medically preferred treatment would be surgery. Again.

Fresh out of theatre with my head still in bandages, I struggled to see how this was good news. Naively I had assumed that this was a one off thing, get through this and back to normal life as soon as possible. It was a bit of a bombshell.

Normally, people are old when they get meningiomas. Being early (mid) thirties, there is plenty of chance for it to grow back. If it grows back every 10 years, that is potentially a lot more times I might need surgery.

I really don't want to go through the surgery again.

When I was first out of hospital I mentally parked it, I just couldn't think about it. I was so glad the surgery was over, to still have use of all my limbs and to be back home - that's what I focussed on. I was devastated at the thought of having to go through this again and couldn't process it. I just wanted a bit of time not thinking about it.

One month on, I am in a (slightly) more emotionally stable place and able to be more reasoned. Firstly, how likely is likely? Nobody can answer that. We can look at previous cases but nobody knows what will happen in my individual case.

The fact is, I will be having loads of MRI scans for the rest of my life so any regrowth will be picked up early. At which point I can worry about the implications. Right now, it seems a waste of energy and time thinking about what might happen.

I don't want to plan my life around when I might have to have the surgery again, and I can't let it restrict my decisions and take up my thoughts with worry. I will try and put it to one side, in between scans. Mostly though, I don't want it to be what people think about when they see me - is your tumour back?

What I'm really hoping for is a huge advance in technology, that magically removes tumours from inside a skull, without the need to open it. Ten years is a long time, surely this will be invented soon...

Sunday, November 25, 2012

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.

Saturday, November 24, 2012

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.

My one monthiversary.

Suddenly it's one month since surgery. Wow.

I'm celebrating, on my own, in bed, with a migraine. I'm really disappointed. I knew it was a long shot but I was really hoping that the tumour had been the cause of my migraines.


Thursday, November 22, 2012

No longer an airhead.

I realised today that the clicking has stopped in my head. I wonder when that happened?

At first, after surgery, my head clicked and squeaked all the time, there were bubbly sensations and noises to go with it. It wasn't unpleasant, just weird - I actually quite liked it after a while.

After a few weeks it started to come and go. Some days there was nothing, and then it would be clicktastic the following day. It was always much more common first thing, after I'd gone from horizontal to vertical. Once, as I came downstairs in the morning I had a rush of bubbles moving through my head with every stair. I went back up to do it again, it was so funny.

But now it's stopped. I'm glad in a way, as that means that there's no more air in my head and it's healing. But I also miss it a bit, it was weirdly satisfying.

Tuesday, November 20, 2012

The outside world.

I've been outside today. Beyond Camberwell. I accompanied Oliver on his travels, which entailed sitting in a massivo van while he drove around London picking things up and dropping things off in advance of a trade show this weekend.

I have stayed awake all day, which is a first, and although I am totally exhausted now - I had a brilliant time. It was frustrating to not be able to carry things and help more (I struggled even getting into the van - it was really high and my leg muscles are still not really up to much), and extremely frustrating to not be able to drive. I already miss driving, how am I going to cope if they keep my licence for a year?

But it was really good fun and quite refreshing to be interacting with the outside world again. We randomly bumped into a friend, and saw several other friends by design. I was worried about the big reveal, and how I would cope with the inevitable interest. Aside from being called a gypsy it was better than I thought.

One thing I have to watch though - when people ask me how I am, I tend to get defensive. And then it's a bit awkward. Or I am a bit awkward. I must remember that it might be just a figure of speech, it's just what people say when they greet each other.

This is the first step though. Going further afield and staying up all day and meeting people again. I'd become a bit of a hermit, I think.

Bedtime now though.

Monday, November 19, 2012

A lie in.

Up until now I have tried to make sure I get up at a "normal' time so that I don't turn into a nocturnal being, which I'm sure is my natural state. I am not a morning person, I hate getting up. And I like staying up late and am at my best in the evenings. And I really like being in bed. As a teenager, during exam leave, I generally slept until 1pm every day, and stayed up all night. I've been a bit worried about falling unto that habit again.

At first it was easy as I couldn't sleep anyway. I was awake by 5am every morning and waiting eagerly for someone else to get up. But as time has gone on and I've come off the steroids, I'm sleeping better (and so much more) and it's become a bit more of a challenge to get up in the mornings. 

When I do drag myself out of bed I quite enjoy the mornings. You have so much more time in the day! And it's nice to potter around with mum before she goes to college. Generally Olly gets up as she leaves so then I get to potter around with him before he goes to work. 

This morning I slept until 10am and when I woke up everyone had left. I would like to think that it's because I haven't been sleeping much recently and I was catching up. But I'm getting minimum nine hours a night, and an afternoon snooze to boot. 

It's nice to have so much sleep but I'm not sure how well I'll adjust to the real world again when the time comes. I wonder if work will let me have an afternoon snooze under my desk?

Saturday, November 17, 2012

Flying time.

I'm not sure where all the time is going. I've been out of hospital over three weeks now, and I can't think of anything of value I've done in that time. That's a lot of days to fill and I can't remember any of them. What have I been doing?

I've got a list of important things to do, but I don't even know where it is anymore. Let alone what's on it. I have a varying sense of unease that I'm wasting this time, I'm usually quite good at getting things done but now I don't care enough to do them, but still care that I'm not doing them.

When we moved house, about two months ago, we decided to do away with the telly. We didn't really watch it anyway, except for formula one which we can still watch online (yes, we're paying the licence fee). I'm quite glad we did that now, as it would be too easy to slump myself on the sofa all day watching daytime telly never getting anything done.

Much like now really, but less sleeping and more telly-watching. I would feel worse about that.

But back to the time thing, I wrote before surgery that time had been elastic. It's strange how living through it takes ages, but when you look back you can't believe how much time has gone by in such a short space of, well, time.

In one sense I have been wishing time away, for example I can't wait for this Wednesday - it'll be four weeks and I can go swimming. And also wishing it would slow down so that I can recover more, faster, before I go back to work.

Looking backwards, it feels like time has gone so quickly. It's insane that I went to the fireworks a week after getting home. It was eight days after surgery and I was frustrated that I couldn't walk faster. I'd just had brain surgery what did I expect? But at the time it felt like I'd been home for months.

I wonder if I'll look back on this time in a similar way. Three and a half weeks seems ages from where I am now. I wonder if from a future perspective I'll see it differently.

Friday, November 16, 2012

Wasting away.

Something that has surprised me, is how fast you can lose muscle. I spent five weeks pretty much lying down and my legs went stick thin. Believe me, this is unusual. I have massive calf muscles normally, they are bigger than my knees and I can't get knee high boots to fit unless they are built especially wide. It's been a serious source of heartache over the years.

At first I wasn't complaining. I watched a film once with Emily Blunt, who has very thin legs, and she wore a lot of shoots (shoe boots, mum) and miniskirts. At the peak of my thin-leggedness I felt I could pull this off. Had I been able to stand up.

But recently I've realised it's no fun having no muscles. My legs don't work properly, I can only walk a short distance and running is out of the question. The worst thing is if I crouch down for any reason (for example to look in the freezer), there's no chance of me getting up. It is surprising how often you crouch down.

So I plan on walking a lot more in an attempt to build my muscles back. A twenty minute walk on both Saturday and Sunday last week left me with pulled calf muscles. My hamstrings were so sore behind my knees that I couldn't straighten my legs. Mad. Although my calves put on a huge amount in circumference from the experience.

From now on, I'm going into training mode. After I've watched last night's IACGMOOH. Oh, and bought my Killers tickets for Wembley - woop.

Thursday, November 15, 2012

Henry ate a fish.

People keep asking why Henrietta is called Henrietta Fish.

The story goes like this. A former housemate of mine, called Our Kid, swears that he knows someone who swears he knows someone, called Henrietta Fish. That's her actual name.

Whether this is true or not ceases to matter as it's so funny. Imagine calling your child Henrietta Fish? Poor thing. The very mention of Henrietta Fish used to send me into such a laughing fit that I've been known to fall off chairs. It's been used against me as a weapon, to make me laugh hysterically and forget what I'm doing. It's up there with Janet Street Porter being washed down a mud slide. Face first.

It's the one thing that is guaranteed to make me laugh, and under the pressure of having to come up with a name for this blog (and I didn't want to call it anything to do with "mytumourdotcom") I thought of Henrietta and it seemed appropriate. Well, not appropriate but funny. And I like funny.

So there you have it. Maybe Henrietta Fish, who knows someone who went to university with Our Kid, will be googling herself one day and will come across my blog. And then she'll read this and think, that's ME! And then she'll probably be quite offended. Sorry Henrietta.

Some exciting news.

I'm very excited to report that an extract of Henrietta is going to be published in the Guardian's G2 section! Am slightly (very) nervous about it - it's weird to imagine people reading my ramblings, in print, over their rice krispies. But also very excited, I love the Guardian.

It was strange, how it happened. We were in the car leaving Olly's office and I got an email from Twitter (which is annoying actually, Twitter has recently started emailing me all the time) to tell me I had a new follower. I checked her out in case she was a spambot but no, it was a genuine person who worked at the Guardian. That's all the information it had.

I turned to Olly and said "Imagine! She could be a commissioning editor and they'll publish Henrietta and we'll be famous and then hollywood will make us into a film and then we'll be rich and never have to work again!" after which we spent the ten minutes driving home debating who would play who (Anna Friel and Jason Statham. Of course).

So half an hour later, over lunch, when I got an email from the G2 commissioning editor wanting to publish an extract of Henrietta, it was all a bit weird.

They're sending a photographer round next week. Gah! What will I wear on my head? And what will I wear?

Just waiting for the call from hollywood. Any day now.

Wednesday, November 14, 2012

Post meh, already.

It's mad how whenever I'm feeling a bit down my instinct is to not talk about it. But when I do, it makes me feel better immediately. It's not been five minutes since I posted 'Meh.' and now I feel loads better.

Nothing else has happened, how does that work?


Feeling a bit down today.

It's like, when everyone goes off to work and college and I'm left to my own devices, I am not doing anything constructive. Yesterday I watched IACGMOOT on catch up. It really made me laugh (although it's disturbing that their bandanas are the same as my favourite headscarf). Then I ate some crisps, had a sleep on the sofa, read Heat magazine. I didn't have a shower or manage to get out of my pyjamas and slippers all day. I didn't do anything of value.

And my hair looks ridiculous.

When there's nobody else here I don't have any will power. And I feel a bit guilty for doing shit all. Like watching rubbish telly and eating crisps! (It's not rubbish, it's brilliant. Love Ant and Dec). I'm just wasting the days away. I think it's the guilt more than anything that is getting to me.

And the fact that I feel a bit aimless. Long term, there are loads of things to look forward to, but in the short term I'm just trying to get through the day for the sake of getting through the day.

Hopefully it's just a blip, I'm sure it is. I didn't do any of the things on my list yesterday, and I know it would make me feel better to do something constructive, but I just don't have the motivation. Or energy, it feels too much like hard work.

I suppose it's only been two days, I'll do something constructive soon - maybe after I've watched last night's IACGMOOH...

Tuesday, November 13, 2012

Itchy itchison.

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

Monday, November 12, 2012

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?

Sunday, November 11, 2012

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.

Saturday, November 10, 2012

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".


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.

Friday, November 09, 2012

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.

Thursday, November 08, 2012

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.

Wednesday, November 07, 2012

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...

Tuesday, November 06, 2012

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.


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.

Monday, November 05, 2012

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.

Sunday, November 04, 2012

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).

Friday, November 02, 2012

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.


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.

Thursday, November 01, 2012

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!