The news.

It's been quite I while since I felt compelled to write. My voice feels increasingly irrelevant, and in the wake of yesterday's news continues to be, but I finally feel compelled again. 

Today, Rae turns one. I have just been up with her shushing and patting and feeding and squeezing and crying. And now it's 4:30am and I've come back to bed to write a blog post. 

Once upon a time I was obsessed with the news. All through my life I can date things I have done by events in the national and international press. I would scour my favourite news sites before I got out of bed every morning and any time I got a couple of minutes to spare throughout the day. I participated in lively discussions about current affairs. Not any more. 

I've always been emotional but since being ill and having children it's become ridiculous. I cry at everything, I've learnt to hide it quite effectively most of the time. Adverts get me, songs, my own mental thoughts, but worst of all, news stories. 

A few months ago now I stopped reading the news. I went cold turkey and at first I got loads of time back and revelled in my complete ignorance of what was going on in the world. I actively shunned conversations about the refugees, about economic cuts and our completely out of touch and cruel government. It felt comforting to not think about it, protected from the bad news. 

I feel guilty about it though. I don't like reading about, particularly the refugees, because I feel guilty, and unfairly lucky. It reminds me what we have, and the fact I have done nothing to deserve the good fortune of being born in the UK, to intelligent, kind and hard working parents. To have a family of my own, and a support network I can rely on. A house. Maternity leave. Two heart wrenching children. A life. 

I feel guilty for what I have in comparison, and I feel guilty for not having the emotional resilience to read about others or be able to help. So I have basically stuck my head in the sand. 

Social media is now my main pointer to world events, which is hardly a good indicator - my faith shattered after the Tory win in the general election last year (still hurts). 

Already emotional about Rae's impending first birthday, and my dreaded return to work, yesterday's shooting and stabbing of an mp has really got to me. Regardless of the political leanings of the victim, this is shocking news - have we really come to this? I can't quite get my head round it.

But then to hear about Jo Cox and the integrity and intelligence and kindness that she is, and the dignity of her husband in the wake of disaster, the fact she is northern, compassionate, an incredible role model for our children, a mother. I can't understand the unfairness, I am so upset. 

And once again I am given some perspective. There are more important things than poos on the kitchen floor and who last emptied the dishwasher. Today, Rae turns one. I want the best world possible for her to grow up in, people like Jo Cox to inspire her. 

I think it's time I started listening again. 

Onwards.

A while ago, it became apparent that we'd lost the charger for our good camera. Inertia kicked in and nothing happened for a while, but then Oliver bought a new one. Last night I went through the photos on the card and had a very timely overview of our 2014.

As a whole, it has been a great year. Alfred has grown from someone who could barely sit up to a fully functioning toddler, and it has been fascinating to watch. We've been away loads and had a brilliant time with friends - all captured on this card. 

But then there's a big black hole since September. No photos, on either camera. No positive memories at all. Just a whole elongated pain in the arse, which I am now going to list so that I have proof in years to come that it genuinely has been "a hard time".

• Teeth
  Bloody teeth! Why aren't they just born with teeth? I used to roll my eyes and yawn when parents moaned about their kids getting teeth. "You chose to have a child, and it's a well known fact that children grow teeth. Deal with it". The reality is of course that I don't care about the actual teeth, I care about the sleep deprivation on top of a full time job. Two solid months of four hours sleep a night, simply isn't enough, when it's impossible to catch up during the day.

• Burning bottom syndrome
  I don't know what this really is, but basically it seems that when our child is ill, his body rebels by expelling pure acid into his nappy every five minutes, which swiftly dissolves the skin on his bottom. Cue pain, upset, and more sleep deprivation.

• Aeroplanes
  Put it this way: I am not stepping on another plane with Alfred until he is 16.

• Broken electronics
  First it was Oliver's Macbook Pro, it proper just died. Then the iPad, with it's cracked screen. Then, of course, my Macbook Pro. The screen mysteriously cracked itself one day... I still haven't got it fixed due to the fear of having to remortgage to pay for it. But I probably should get it seen to.
  
• Upstairs builders
  Our upstairs neighbour (who is lovely, you couldn't ask for a better neighbour) has unfortunately employed some cowboys to renovate her flat. They have taken ten weeks (so far) to do a three week job. They are incapable of speaking at normal volume and have taken up the floor, so I can pretty much hear them breathe - let alone drill and bang and thump around. Getting a child to sleep is tough enough at the best of times. Humph.
  
• Leaks from upstairs builders
  We've had six leaks (and counting) of varying seriousness from the resulting chaos of the upstairs builders. Those are the ones we know about. The worst of these poured through the bedroom ceiling onto our bed, ruining our (incredibly expensive) mattress, the cover, topper, quilt, pillows and will to live, the week before Christmas.
  
  Insurance is a great thing, but they don't compensate for sleeping on the living room floor every night. And for the added sleep deprivation caused by both of us being up with the toddler during his 'refusal to sleep' period, as there isn't another room to use. And the fact that my dad couldn't come to stay for Christmas. This whole experience has made me very sad. I love our bed, it's my favourite place in the world and I hate that some idiot left a tap running and ruined it, just like that. 

• Smoke alarms
  Another consequence of the leaky builders is that they short circuited the electrics running the smoke alarms in the whole building. There are four in total, and they all went off at different times during the same night, on various floors, in different flats. Oliver, (in my head dressed as a superhero, with earplugs) heroically located and smashed each of these as they went off, dodging buckets catching leaks, in pitch darkness, armed with a "big nail" apparently...

• The crack head
  We were woken early one Sunday morning (one of the rare ones when Alfred was actually asleep) to a suicidal crack head on the door step in the throes of a panic attack, searching for Wesley. I added this in for comedy value, but it wasn't very funny at the time.

• Hand foot and mouth
  In itself, not a very serious disease at all and nothing to do with cows. Alfred managed to get a secondary infection, a nasty rash all over his face and bottom and parts of his legs. He was uncomfortable, with a temperature, unable to eat and generally miserable - and awake - for about two weeks. Enough sleep deprivation already.
  
• Ebola
  My mum is out in Guinea, helping with the Ebola efforts, which of course is very commendable - as long as she doesn't get Ebola. It hasn't helped my anxiety.
  
• More teeth
  And then, out of the blue, I realised that we hadn't had any new teeth for a while. And so... yup here they come.
  
• Broken car
  Poor faithful Fergus. He has something wrong with him. The day before Christmas, when we needed him most (the supermarket closed at 5pm and I'd of course left it until the last minute) he packed up. Just like that. What we really needed was an extra little something to make the logistics of Christmas less smooth.
  
• Morning sickness
  Throughout all of this I felt like crap.

I've not been feeling the most positive about 2014, if I'm honest. Although lack of sleep seems to make everything just worse, so I put a lot of it down to that. Anything we own, of any value has been damaged. And I'm tired.

So it was really quite an eye opener to see months and months of fun on this memory card and realise that we've in fact had a great year overall, just a tough couple of months. It's almost the end of the year, and although it's an arbitrary line in the sand I'm looking forward to a new one and a chance to start afresh. 

Happy new year everyone, I hope 2015 treats us all kindly xx

October 2014

It's been two years now, since the surreal experience of being told I had a brain tumour. Last year I really succumbed to the memory of it. I spent ages explaining in detail to anyone that would listen, what happened when. I enjoyed prodding the scab of my still bruised psyche and in the process, pushed the patience of my closest ones to the limit.

I thought that it was a one year thing, and that I would then move on.

But here I am. Two years have passed and I'm still banging on. I can't stop thinking about it. I know exactly what I was doing at this time on this day two years ago. It's taking all my will power to not keep reminding people as each hour moves on. (Right now, we were in A&E and I was just about to go for the first scan. We didn't know yet. We didn't know.)

Today and tomorrow were dramatic. Although my day today is fairly mundane, in the background, I still feel low level adrenaline and anxiety. Poor naive us, sitting in A&E, oblivious.

I wonder if I'll ever move on.

A question of identity.

I've been thinking about this for ages, but without any real conclusions or a spare minute during the day, I haven't quite got to writing it down. I'm going to start now and see where it goes. Bear with me!

Before tumourgate, it's tempting to think that I used to be this set person, just waiting for my life to be turned upside down. And now that it's happened I'm somebody else. Someone who has been through it and changed and now I'm me. But in reality it wasn't like that. It wasn't as if my life was uneventful up until that moment. The things that happened in the previous life were just as massive to me then, because I didn't know that in comparison to what was coming, they were pretty insignificant.

Identity - by which I mean how I feel about myself - has always been a bit fluid. For a long time I felt as if nobody knew the real me, the one I kept hidden because surely if anyone did know they wouldn't like me. The worst insult growing up was always "nobody likes you". So simple. 

I suppose that how I identify myself is dependent on others around me. My sister is a brainbox, always has been (she's not so hot on remembering punchlines, though) and so I always felt quite stupid. Being the youngest probably didn't help with that. My handwriting was always messier. I couldn't run, draw, read as well as her. My hair was shorter, straighter, she had better clothes and more friends. I felt like the little sister who can never catch up - she'd always moved on whenever I got there.

When I got to A Levels I realised maybe I wasn't stupid as such - just not a natural academic. That was the first time I remember my actual self identity changing. But it's happened a lot of times since, when I think about it. 

Being older is way better. I'm one of those "everything gets better in your thirties" people, definitely not one of those "school is the best years of your life" people. Since being 30 I have enjoyed life much more and I believe that is in no small part down to being happier with myself and confident enough to let people really know me. I'm happier with my identity.

Telling people I've had a brain tumour is really strange. It has this kind of fizzly silence just after you've said it that people just stare at. A tumour is bad enough, but the brain element is what makes it mysterious. The black box of humanity. I read a great quote once: If our brains were simple enough to be understood, we wouldn't be smart enough to understand them. (Incognito by David Eagleman, it's brilliant). Brains are scary. A friend of my dad had a brain tumour when we were little and I was astounded that he was still alive. I thought it was definitely something you died from. 

It still doesn't really feel like I had that. I've never really identified as someone with a brain tumour. Maybe because it was over really fast, and maybe because as soon as it was over, the impending Alfred took all my focus. Or maybe it's just a reaction to extreme stress, my brain has rejected it. 

What is strange is that other people identify me by it. I'm the one that had the brain tumour. Any new people I meet now, it's a big thing to explain - when do I mention it...? And when I meet people who I already knew, I get the question. How are you? They're not asking how I am, they want to know about the brain tumour. Really though, how are you? 

And in that instant, I finally do identify as a brain tumourer. 

I am, technically, a mother. I have a baby, that I grew! And have fed and clothed and washed and carried around for nearly 11 months. He is my baby and I am his mother. But I don't really feel like one. I'm not old enough for starters. When we're together it's obvious that I'm a mother, but what about when he isn't there? Do people know I have had a baby? Do I even remember I've had a baby. Erm...

The question of identity had been brought more into my thoughts through motherhood than brain tumouring, but really the same principles apply. At first, when in the throes of shock, there are clear physical signs. When the signs have gone and you can choose which version of yourself you want to show the world, it is all about how you want to be judged.

I'm about to start work again after a long time off and some huge life changes. I don't know my new boss or anyone on my team. How are they going to see me? Who will they think I am based on what they know about me? And will that change my identity, and how I see myself? 

No words.

Sometimes something happens that makes you totally reevaluate what you have, and see things through a different filter.

When something awful happens to someone else, the power of the imagination is scary. You can't understand what it would feel like, or what you would do, or how you can help. It's paralysing. Also the disastrous potential - the destruction of the 'it'll never happen' bubble.

The cruelty of not being able to turn back time is hard to get your head around sometimes.

I wonder why I wrote this using 'you' and not 'me'. Clearly I'm talking about me, my filter, my imagination, my paralysis.

I was on the receiving end of this with tumourgate, and always suspected it was harder on those close to me. It's not pleasant though either way.

The value of NCT.

We signed up for anti-natal classes with the NCT a while ago, for two reasons. We haven't really got a clue about babies, and we wanted to meet people who were in the same boat in our area. It's quite an expensive operation, and I'd heard quite mixed experiences from friends but we went ahead anyway. I was disappointed that there isn't a class in Camberwell, and we were too late for the East Dulwich one, so we settled on Brixton. Which is pretty close anyway.

At first I found it really tedious. There was lots of information, but two hours at the end of a long day at work nearly finished me off. In the first weeks there wasn't much chance to get to know anyone either as the sessions were so full on. I was initially worried about the reaction to my elective caesarian, but everyone was very supportive. The mention of a brain tumour usually sorts that out.

As the weeks went on I warmed to the whole process and our "teacher" grew on me too. I found her views on homeopathic remedies refreshing. She refrained from the full blown rant I would have succumbed to, but made it clear what she thought. Skillfully.

Our group is lovely, I think we've been really lucky. It's blatantly apparent though that in the middle of Brixton we must be the only eight white middle class pregnant couples - all married. In contrast to a visit to Kings, where we are frequently the only white couple in the waiting room. NCT goers are a self selecting group, and a homogenous one. The cost and the perceived values of NCT mean it will only be attractive to a certain demographic. That's a shame, for the NCT.

But the real value to me is only just coming into play. We have started popping! Alfred was the first to arrive, and he is two weeks old today. Since then there have been two more babies and I suspect one more is on the way right now.

The support and banter of the other NCT girls has been great. I didn't know these people before I was already heavily pregnant and there isn't any history to our relationships. But that makes it simple. We have one major thing in common and can talk about it without prejudice or politics. We're all in the same situation and it's comforting to go through it with other people. It is almost a benefit that I didn't know them before.

I always suspected that it would be the people that made the NCT experience, and that has turned out to be the case. I am glad we did it and I can't wait for the others to arrive.

So nearly there.

It is obvious, but the thing about a planned caesarian is that you know when it's going to be. That's really weird. Since we found out the date, time has been on warp speed - which I wasn't expecting. I thought it would drag.

Now that we're down to single figure number of days, things are becoming increasingly surreal. (I'm being intentionally vague about the date. I'm not sure why it's important to me but a mixture of privacy and still wanting an element of surprise has meant I've tried to keep that information in the family only. I haven't even told the girls.)

The nearer we get, the less it all seems like the brain tumour. Earlier on all I could see were the similarities but now it couldn't be more different. I'm so excited! I can't bloody wait to meet him, and I can't bloody wait to be not pregnant. 

But mostly it's not about me, and that's what sets this apart - not just from the whole brain tumour experience, but everything I've ever known. I was so isolated throughout that whole episode. I had wonderful support but at the end of the day it was just me on a trolley that had to go through with it. Now, it's everyone. As a family. Two families. One massive family and the creation of a new tiny family. It's about all of us. 

We are officially ready. That clever thing that kicks in towards the end of pregnancy which gives you the courage to go through with the birth has most definitely kicked in. The uncharacteristically boiling weather, the permanent uncomfortableness and the lack of sleep (I know I know) has contributed. I'm done with talking about it now, I'm bored of the advice, the condescension and the lack of other topics of conversation. I am ready. We are ready. We have all the stuff. The bags are packed and the freezer is stuffed full of food. We have a buggy in the hall! 

And yet it's still so surreal. We have a buggy in the hall! 

When I grow up.

It's odd to look back at last year, given how much has changed. The person I was then seems naive, and simple. But I wonder if that would always be the case when looking back at a former self.

Last year was momentous in many ways, we had such a good summer - carefree and excited about the future. Although if I honestly look deeper than the surface, it wasn't all great. I loved the Olympics and we did some really fun things, but I didn't feel well for months and there were other difficult times. I seem to easily overlook this in remembering.

It's easy to feel a bit sorry for the person I was a year ago, I had absolutely no clue what was coming up. In some ways that's the best way to be and so it's also easy to feel jealous of that person. I can never be that again - I know what can happen now, and it's always there at the back of my mind (has it grown back yet?). Also I know that I'll never know what else could happen. And anything could. Things will never quite be as carefree in the same way.

But - that feels like a good thing as well as a sad thing. It feels like we're all growing up. Quite suddenly everyone has stepped up a notch, moved forwards. Not that long ago we would go out and get raucously drunk and sing in the street at 3am. Now we meet for an afternoon drink with our babies and bumps and new boyfriends. Or husbands even.

Which is scary, because I haven't yet decided what I want to be when I grow up. I am now at this point in my life where everything is in the middle of changing. Emotionally, physically and psychologically, this year has changed me. What I want out of life isn't the same anymore - but I don't know what I do want.

This next six months is going to be the most different my life has been to anything I've experienced to date, I can't comprehend how different it will be. But I'm hoping to use it to figure out what the hell I want to do with the rest of my life. Answers on a postcard please - I have absolutely no idea.

Nothing much to report. Funtimes.

Some really cool stuff has been going down recently, which has meant that I have nothing to write about. No tortured thoughts, no massive quandaries, just plain old fun.

Firstly, I went on holiday. Like, a sunny one with a pool. It was great. Loads of family together and we ate so much food and lay around in the sun I can't remember the last time I did that. We did do some culture type things too, but it was the lying down bit that I liked best.

Then it was my birthday. Which was nice. I managed to drag it out for quite a while and despite not being able to do my usual drinking binge it was really very good. Lots of family time and getting my own way. For a change :)

And then, I got a letter from the DVLA, giving me permission to drive! The letter is proof (of permission) to tide me over until I get my licence back. It took a bit of chasing but eventually it arrived, and I could drive again. Hurray! Incidentally, isn't it weird how you don't forget how to drive? I've been quite impressed with my multitasking. Feet just do things without me telling them to. I'm still finding it a bit tricky to work the wind screen wipers though.

And on top of all that, the weather has been lovely and we've had a few bbq's in the garden and seen loads of friends and made loads of plans. We even went to the cinema last week for the first time since surgery. I found it a bit too loud to be honest (and way expensive, when did that happen?), but it felt like a milestone.  

AND oh my God I almost forgot - we're getting a dishwasher delivered on Saturday. The rest of the day will be known as dishwasher day minus five. Get in.

This must be quite dull as posts go, but everything seems to be swimming along fine for now, which surely must be worth making a note of.

A controversial decision.

There is something I would like to confess. To just throw out there in the hope of diminishing the power it holds over me.

I want to have a caesarian, and if all goes to plan and nobody makes a sudden early appearance, I will. There is no medical reason for me to have a caesarian, and so I'm painfully aware of what this might look like, and the judgements that people might make. 

This hasn't been a quick decision to come to, and although I feel happy to have made it, I still feel ashamed. Which is a shame. It's difficult to not get defensive about why I have made this decision, and it is very tempting to use last year's surgery as an easy way out of a difficult conversation. I want to understand more about why I'm ashamed, and to explore it a bit.

I know loads of people who have had children, and none of them chose to have a caesarian. I am full of admiration for them. A high proportion of those I know did actually end up having sections, as an emergency measure in the late stages of labour in order to save either the mother or the baby's life. I am the first person I know to choose to have an elective caesarian.

A few different things contributed to this decision. 

Past experience of childbirth.
I am very close to my sister and was there for the births of her two daughters. Both were traumatic, and ended in emergency sections, for different reasons. The second in particular was touch and go, with both their lives being in quite some danger. I know this has no bearing on how childbirth would be for me, we have different body shapes (people have been known to mention my "child bearing hips", much to my delight) and we are different people. 

What happened to my sister is unlikely to happen to me. But it isn't just my sister, it's loads of people. I don't actually know one person who's giving birth experience wasn't traumatic. This isn't a good thing in my book, especially because...

I'm a chicken.
I have always been afraid of pain, and childbirth is well known to be painful. Obviously I realise that people have been doing it for ever. It's a natural process that the body is perfectly designed to manage. Pain relief or no pain relief, this is arguably what I'm here for. But I really don't want to do it. Just thinking about it makes me really anxious. 

I know I could do it if I had to, last year taught me that. But if there is an alternative then I'd like to take it. Last year there was no alternative, and that was a horrible feeling. I had to be brave and I had to agree to my skull being opened. There wasn't another option. 

Clearly, a caesarian will hardly be pain free, but it's a pain that can be anticipated and understood. And prepared for. 

I want to know what to prepare for.
Childbirth is unpredictable. And unknown things happen. I don't know where to start in preparing myself for it, or for any of the things that can go wrong. I feel that choosing to have a caesarian from the outset means taking control. I can prepare for the operation and can look into exactly what it entails and how to best be ready for it, and best recover from it. 

An added benefit is that I'll know when it will be in advance, so we can make sure we're ready for whoever is going to be joining our family, and I can plan properly. We also won't have lost a night's (or two nights') sleep labouring. Although I reckon maybe lost to nerves instead. 

Additional bonus things.
I really don't like the idea of tearing. There, I said it. Or incontinence.

Having made the decision, and being whole heartedly supported by Olly (the only person who's opinion really mattered to me - it's his baby too), I immediately felt a whole weight of anxiety lift. There was a big black cloud over the pregnancy that I wasn't quite allowing myself to think about, and now it's gone.

I believe that it is better for the baby if I am less anxious during pregnancy and this decision has certainly achieved that. If he arrives unexpectedly then I will obviously cope. But by then I will have progressed through the majority of the pregnancy anxiety free, and the benefit from that will have already been banked.

I haven't really spoken about the risks here, but have gone through them with my midwife and various consultants. I'm sure I will go through it all again with them before we set a date. If there was a clear indicator that a caesarian would be worse for the baby, then this would be an entirely different matter.

I still feel like I'm being defensive about it, having just reread what I've written. It's a difficult subject that many people have strong opinions on. Having said that, everyone I have spoken to so far has been really supportive, so I don't quite understand why I'm so defensive. Maybe it's the selfishness of the decision - am I doing this for me, or for the baby? Realistically, I am the one benefiting.

Being honest, I would have always wanted to have a caesarian, but before brain surgery I wouldn't have had the conviction to ask for one. I'd have felt like I had no right to take the "easy" option. Now though, I'm less afraid of what people think (although clearly still bothered by it, just not enough to change my mind).

I have new priorities now. I am going to do what I think is right for me, and our family, based on our situation.

Life goes on.

In my first year at university I learnt about personality. I can't remember what the thing was officially, but the concept struck me as good. It proposed that you didn't have one clearly defined personality, but many (or an incredibly flexible one) - and you unconsciously used them differently depending on who you were interacting with. Hence the uncomfortable feeling when your friends meet your granny.

At the time I had many different groups of friends from different environments, and when they got together it felt strange. I didn't know who to be or how to act, so this idea made a lot of sense to me. I liked it.

When I started Henrietta, I was in a pretty weird place. None of the usual politics bothered me, and although I didn't want to offend anyone with what I wrote, my attitude was fairly blasé. I didn't really care that much to be honest.

Being ill had a way of focussing me. I could suddenly see really clearly what mattered - and what didn't. I became a single personality, the same person to everyone. I didn't feel the need to hide parts of me, or mould myself to what I thought people wanted me to be. I just was me. One of the best things was just being able to write. It was liberating: not giving a shit.

I made some resolutions during recovery, about how as I felt my way back to normal life I wouldn't slip back into the old ways. The ways that I had suddenly and clearly seen as unnecessary, like worrying too much and not aways saying what I think. I also resolved to do more exercise and eat more healthy and generally view this as a second chance, a way to start again (but better this time round).

None of these things have happened.

What I am particularly sad about is this loss of not caring. I now really question what I want people to know and I find myself not communicating as openly anymore. That's the real reason that I stopped writing so much. I can't be as honest. Life has got in the way.

It is sad, but it's real, actual, life. I feel naive to think that I really thought I could maintain the simple mantra. I go back to work tomorrow, and I'm very much looking forwards again and getting excited about the future. I don't actually mind that much really - it's been such an interesting experience but it's nice to feel a bit normal again.

Life goes on.

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!

Thanks for reading.

I think Henrietta is coming to an end. When I started writing it was cathartic and helped me work through how I felt. It swiftly grew to be fun, something that I looked forward to and spent most of my time thinking about. And then it became informative and finally entertaining, I hope, for some.

It has worried me along the way if I would know when to stop. When all I have to talk about is the mundane then it isn't fun to read, and no longer worth writing. I think that time has come. For now.

After nearly two weeks in Brighton getting stronger and fitter and managing to stay awake for whole days at a time, I am finally getting back to some semblance of normality. And I'm going to book a hair appointment later too, as hair is growing over my ears in an unnerving manner. Nowhere else of course, just over my ears.

I will continue to post updates if anything interesting occurs to me, but for a while at least this will be my last post.

My parting thoughts are about people, and support. From the beginning of this experience I have been incredibly lucky with the people that I have come across. Firstly the GP who recognised something was wrong and sent me to A&E, and secondly all the staff at King's - they were fantastic. Without such good care it would have been a much scarier and negative experience, so I'm very grateful.

And then friends and family. I don't know where to distinguish in some cases, friends have become family. The early part of this blog talks a lot about how I felt alone. That stopped after a while, and looking back it happened after my dramatic facebook announcement. I was shocked by the deluge of support in response, and knowing that support was there, and people were thinking about me, really helped. Thanks everyone.

I can't fit all the get well soon cards on the mantelpiece, and I know some people even sent two. At one point the house looked and smelled like a florist, and there were even some balloons...

After the extract went in G2 I got some really thoughtful emails from fellow tumour patients around the world, as well as scores of people wishing me well. It was emotional to read other people's stories, much worse than mine, but heartening that I had had a hand in starting a conversation. There is a sense of community about it, and it's great to be a part of it.

My immediate response to all this support was self doubt. I have been very lucky in that I am recovering quickly, with few side effects and little pain. I don't really feel deserving of all the nice things people have said. I've battled with this, after many discussions / arguments, but I know it's a common feeling with others in this situation.

You just have to deal with what happens in life. It didn't feel like I was being brave, or strong, or anything out of the ordinary. I was doing my best to get through the experience as I would any other obstacle. I can see that it must look different from the outside, but from within, I was just doing what anyone would do (and countless people have).

I remember throughout having a general confidence that everything would be ok in the end. Not that I knew what the outcome would be, just that I would deal with it and it would be ok. And that confidence came from the support I knew was behind me. I feel really touched, and grateful and incredibly lucky. Thank you.

Have a happy Christmas everyone!

Thanks for reading,
Jx

What a year.

It's one year today since we got married. Normally people review the last 12 months at New Year, but this seems like a better milestone for me.

Shortly after we got married I started keeping a private (to me and Olly) blog detailing what we got up to at the weekends. From early January 2012, I have kept this up to date every week. It is fascinating to look back through.

Some things really stick out, like the olympics - that was brilliant. And our friends weddings, five of them! My niece being born. And of course the brain tumour.

Last Saturday night we were in a pub in Hove, reading each other random weekends from 2012. I noticed it was the little things that I'd completely forgotten about that made the biggest impact. When we roasted a whole duck and had millions of crispy pancakes for tea. When we saw a man trip over his baby in a pushchair and we had to call an ambulance. When we were in the studio with Jake Morley and band recording a live session.

It was great to be reminded of all the brilliant things we did this year. I'm so glad that I kept the blog now, it was a pain at times, but definitely worth it. So much just slips into obscurity and it's great to have a record of happy times, hungover times, sad times and shocking times.

It's been a big year, we sold a house and bought a house, we got a new niece and saw some best friends compete in the olympics, and many others get married. We went to loads of gigs, ate loads of curries and saw loads of our families. And we survived a brain tumour.

Overall it was definitely a great 2012. Happy anniversary Oliver!

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.

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...

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.

And so here we are.

This is really what I was interested in, how on earth was this going to feel? And suddenly here I am. How did I get here?

Time has been elastic. It has moved so quickly and yet it feels like it's been forever. A day lasts a week and then a week flies by in a few hours. And now here I am, in hospital, waiting for brain surgery. Life is very strange.

Have I really got a tumour in my head? It just doesn't seem possible.

Right. Well, I better try and capture some sense as well. I am feeling ok now, quietly calm. The ward is nice and the nurses lovely. I've just taken some pills to knock me out but I'll be woken soon anyway for obs, and then again a few hours later for pre-surgery shower. So I'm actually not too worried about not sleeping, there won't be time to sleep.

After all that.

I also don't feel alone, I have the internet for one thing (no idea how, or why, but it's really improved the hospital experience). And it's good to be writing. I also have Luis. Will get a photo of Luis up on the photo page at some point, he is a felt turtle from my sister, to keep me company.

Up and down then I suppose. I was definitely in a panic before, but now I'm back on track. I'm hoping I just needed to get it out the way and realise the depth of the terror, so that it would lose it's power. That may have happened or it may have just abated and is lurking around the corner. I'll find out.

Thanks for all the messages. It's been a bit overwhelming today so I've been keeping a low profile but I really appreciate the kind thoughts everyone has been sending. Thank you.

I'm going to hope the pills work now. Night night all.

An open book.

I'm normally a really private person, and find it quite hard to talk to anyone outside my close circle about how I'm really feeling. The whole idea of publishing thoughts for anyone in the world to see was so foreign to me a few weeks ago, it's strange how far I have come.

At first, I found it really helpful to write things down and create a bit of order to my thoughts and free up a bit of space in my head. But I found that I was having the same conversations with people, after I'd been writing about it. That was quite strange. I'd spend the day on my own thinking and writing, and then when I saw people I'd have this ready-made conversation that I'd been crafting all afternoon.

And then I told a few people I was doing it, because it was helpful. And then the address was squeezed out of me and I finally let go. Up until now I have always felt very exposed by writing. My only real (and very proud) writing background is an interview I did for GU on the super olympian triathlete and one of my bestest friends, Jessica Harrison. I remember being terrified handing it in and just felt very judged on writing style and journalistic integrity blah blah. Basically, I was very insecure about it.

I don't feel that now. Obviously my perspective has somewhat changed given recent events, and I've talked a bit earlier about confidence, but it just doesn't seem to matter anymore. I think that as long as I am writing this for me, and with a benefit to me, then it will work. The worry now is that I start showing off and writing bollox just to entertain people, and then it wouldn't work anymore. Have to watch out for that.

But back to the main theme, there are two points I am trying to address. One is about the being open, and how funny it feels doing that. Two, is the effect of that on people. Here, I am more concerned about the people closest to me who would then have cause to question themselves based on what I am writing. That worried me as soon as I let Henrietta out the bag.

So firstly, the privacy thing. I don't know why I've found it hard in the past to be open, and it is something that I've been working on over the years anyway. I have a very close group of friends and family who I talk to a lot, which is great. In general though I find myself in social situations being polite and aware, but not very open. I am quite shy, and I'm often happy to sit back in a group and let most social situations wash over me without contributing anything "real".

This writing seems very attention-seeking in comparison and is taking a bit of getting used to. It's funny to think that anyone can read these thoughts and make their own mind up about them. But then again, nobody has to read them either, and it comes back to the main point here - I'm writing this for me, so I can read it back in years to come and WONDER at all this stuff going through my head. It's like a live experiment really.

And so how is it affecting my closest friends and family? Well, every night when mum and Olly get home I talk at them like a machine gun while they both sit and blink at me. I tell them everything I've been thinking and writing, so they don't actually need to read the blog at all. But then they do, and that's weird because we've already discussed it and I might have changed my mind a bit by then.

But I guess it is affecting people who don't live here differently. The people who I already talk to anyway. They can now read, almost in real time, how I'm feeling from one moment to another. I know that in some cases already this has led to people wondering how they should react - are they being too much or too little? And the thing is I get irritated by things people might say sometimes, but not by the people themselves. I don't want anyone to have to worry about what they say in case I'm irritated by it.

So the question is one of balance I think. If I say I'm irritated by something, I don't want that to mean all the people close to me think "Oh God, I said that yesterday...". In that situation, I'd rather not make anyone question themselves, but I also want to be honest about what irritates me - so that I remember. I want to log it, warts and all.

Here's a good example: people REALLY like to tell me that they "just know" everything is going to be ok. Now, I logically know that you would only say this to make someone feel better and because you don't want them to be worried. It's a nice thing to say, but it drives me up the wall.

It makes me think that people think I am overreacting for worrying. And then it makes me a bit angry and defensive because, quite frankly, I am worrying. And I don't understand how them thinking it's going to be ok will stop me worrying, and then I think actually - I WANT to worry, I think it's healthy to be a bit worried. Never been one to stick my head in the sand.

But really I know people are just trying to be nice. Reading this here, right now, will be making at least ten of you go "ah fuck, that was totally me... what should I do now?"

And that is not want I want your reaction to be. So I'll end this one with a plea, to not take this too seriously. Please don't take it as a personal message to act in any way around me other than you usually would. I am aiming to balance what I say, but there's a pretty good chance some of it going to come out quite ranty, but you can bet I'll have moved on to something else after a few more contemplative hours.

Normal, versus normal.

This is probably a bit of a reaction to so many messages yesterday, but it's struck me how weirdly normal the whole thing is.

Everything happened so quickly and we were pretty much drip fed all this information that added up to the eventual reality of waiting for surgery, that the whole daunting truth was never a massive bombshell. It's like I just incrementally understood where we were. And what was going to happen.

And here we are, it just is what is it. It seems so weirdly normal.

I remember when first out of hospital, saying to mum (who to be fair actually was looking quite shell shocked) isn't it a bit surreal that I've got a brain tumour? And she said yes, how did this happen?

But then we both remarked on how, even though surreal it wasn't weird, it felt normal.

That feeling has always been there and yesterday with so many people finding out all at once, the reality of the shock for all of you has shown quite a contrast to my own state of mind. I think it's a good

thing and that I'm adjusting well. I had been worried it was denial but I think now that I really have started to process it. Getting there anyway.