It's only a four year all clear post.

I just can't seem to let the 24th October go by without some kind of comment. Four years is simultaneously a lifetime ago, and scarily recent. I haven't banged on about it so much this year, but it is still very much in my thoughts. A lot has happened since that day, yet I can't help dwelling on it. It feels oddly lonely that it still means something to only me.


Today is also the first day of my first contact as a self enjoyed grown up, so I have lots to distract me.


Happy brain day to me.

Next chapter.

I've only flipping gone and done it - I am officially, and voluntarily, unemployed. Soon to be self employed. This may be what's known as a midlife crisis. Eek.

People often ask me if having kids has changed me. I mostly say no, I'm still me underneath, just more tired and a even more bedraggled, if that was ever possible. But I'm starting to notice that actually I have changed. I'm not so sure it's down to having kids, or even braingate, so much as just getting older.

I often find myself not giving much of a shit about things that would have previously bothered me. Like sitting in a pub on my own. Or having clean hair. I mean *not* having clean hair... what's clean hair? But at the same time I have become weirdly focussed on things that I care about.

Nowadays, I care about my children and spending time with them. But a lot of what I really like doing with them is expensive. It's sitting around with our friends in cafes and pubs and groups where they jump around and exhaust themselves. It's getting pizza for lunch and going to the London Transport Museum. It's buying comedy mini clothing and brand name trainers. (Guilty).

So I need to work. Not just to pay for all that stuff, but also to keep me sane. I love being useful at things and adding value, but only some of the time because I really, really want to see my children at least three days out of the week. Ok, four.

Having initially found my employer wasn't too keen on me only working three out of five days, I focussed on finding a way to go it alone, as a contractor. My plan was to earn a shed load of money - full time if I needed to - on an astronomical day rate, then take some time out of work to dally around in the cafes of Camberwell. So I gung-ho-style handed in my notice.

THREE MONTHS down the line, and I have finally left.

I have always been the most risk-averse person I know, except for Dad, so I'm not quite sure how I managed to convince myself to do this, and why I'm not more terrified. I have changed. The things that matter to me now, matter more than anything has ever mattered, and that makes the risk worthwhile. I am more confident, more willing to go for what I really want and genuinely excited that things are about to be very different. (And I'm also a little bit terrified...)

Hit me up if you need any freelance writing or project / change management doing :)

Scan day 2016.

This morning I had my annual 'toe ring removal' panic, but it came off quite easily when I actually tried. And the whole day seemed to follow that example - things are far more frightening in the run up, but you just get on with it when you have to. And then it's done.

Since my last scan I had a fragment of metal stuck in my eye (don't ask, I don't know) which I ignored for quite a few weeks until it got nice and rusty and I had to have it scraped out over several sessions. Horrible as this was, it didn't occur to me, until I was in the waiting room this morning, what it would mean to have a piece of metal in my eye. They gave me an x-ray to make sure (thank you thank you NHS) and of course it was all fine. Just another thing to stress about.

And then there I was again, ears stuffed with plugs and sponges, knees resting on a pillow (new design from last year - very comfortable!) and my head lost in an oversized clanging washing machine for an indeterminable amount of time. Which was fine when I got there. I quite enjoyed the lying down part actually.

That might be because yesterday I got a bit drunk which is a rare occasion for me these days. I thought it would distract me and help me sleep. It did distract me for a bit, but sleep was not having any of it. Sleep doesn't like alcohol, or brain scans. So I woke up really early and fretted. The kids slept until after 8am, MIRACLE, so I caught up on some of yesterday's Olympics on my own on the sofa feeling sorry for myself. It was really nice.

Incidentally, I was thinking earlier. I wish I'd done one of those fashion blog things, of scan day attire, from the very beginning - I'd have quite a collection by now. It still causes me a lot of anxiety planning what to wear (mostly because I would rather do most things than go out in public not wearing a bra). And I already can't remember what I wore in the early days.

For future reference, today I sported some hareem pants, a long vest and short floppy top and a ridiculous sports type bra thing. I took a normal bra with me to immediately change into afterwards.

Anyway.

Two things worry me about scan days. One is that I feel glum and tetchy and defensive. I am rude and thoughtless and I blame it on the scan and get away with it. I know I shouldn't do this but I still do, which really annoys me. I feel like after all this time I should just get on with it, but instead I take advantage of scan day to get a bit more attention than normal. I should just grow up and stop whingeing.

The other thing is that deep down, I don't think there is anything wrong. (Hence why I shouldn't be moping around). So if it turns out there is actually something wrong then I am woefully unprepared for it, mentally. And then the doubts start to creep in, just to mentally prepare in case, and then I really am a bit jittery and emotional and we haven't even left the house yet.

I hate scan day. It forces me to think about things I don't want to think about. And it forces me to contemplate different potential futures and it makes me selfish and introspected and a total bore.

And it is so lonely. No matter how many people you have waiting outside (and I was lucky to have loads today, singing "if you're happy and you know it" so loud I could hear it during the x-ray") you still have to do the scan alone. Nobody else is in that room. And it's so lonely in my thoughts too. Not for the first time, I wish I could swap brains.

Roll on results day HA. Not.

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? 

All clear.

Having completely worked myself up, it's a huge relief to report that yesterday I got the all clear again. Phew.

A couple of weeks ago I saw a migraine specialist and he was looking at my scan when I entered the room. He wouldn't say much about it other than it "looked ok". If my life were a film (it should be) then I thought this would be an ideal plot to make me think that everything was ok, only to BOOM reveal the return of a brain tumour after all. Surprise!

I was already feeling a bit nervous in the waiting room yesterday, when I was called in by Mr Bhangoo himself. Now, I don't think I can adequately explain how I feel about Mr Bhangoo. The last time I saw him I was still mostly under anaesthetic and couldn't move for terror at the feeling in my head. I don't remember what he said, or what I said, but I remember the shape of his turban silhouetted against the bright hospital ceiling lights. I couldn't really focus my eyes to notice anything else about him.

Since that day, I have thought about him often. This man has seen inside my head, my actual brain, and he has saved my life. He led a team that performed an incredible task, just for me.

In the waiting room yesterday, he called the patient before me and I heard him introduce himself. My mouth dropped open and I just stared. Completely lost self awareness - here he was! After all this time! Last year's scan results were delivered by someone, I don't know who, in Mr Bhangoo's team. It was a quick meeting as everything was fine. So yesterday I just wasn't expecting to see the man himself.

I watched him come out of his room and get the medical notes of his next patient. I was mesmerised. It was all I could do to not run across the corridor and throw my arms around him. But when he called my name (ME!) I was suddenly paralysed. Starstruck. And terrified. If the main man himself, the one who is in charge, the big boss, was seeing me, then there must be a problem. This is not good news.

I tried to convey all of this thought process to Olly through the power of my eyes. Not very successfully. As we entered the room I was steeling myself for what he was going to say. I was ready to hear it - how big? Where abouts? Operable? How long until surgery?

But my life isn't a film, and it was just Mr Bhangoo's day to do clinic. And my scan was fine. I don't have a brain tumour and I got to meet the man that saved my life, again. I have since thought of lots of things I would like to have said to him. Various ways of thank you I suppose. And maybe just a little hug.

Hurray! One year!

I'm celebrating in style on a seven mile beach in Grand Cayman. Much too busy relaxing to write more. Bloody hell though, isn't life unpredictable?

Happy 24th October everyone xxx

About time.

Sometimes, quite suddenly, things that have previously been totally familiar and obvious to me become weird. Unfamiliar and odd.

During recovery that happened with reading. I'd never stopped to think about the words on a page before, they just are. But suddenly they seemed vulnerable and unanchored, like nothing was holding them in place. And although they were floating in the right position just now... what? I'm not sure what to be honest. An unarticulated threat.

It was unnerving and made me quite anxious. I didn't read a book for a long time and then at some point it became ok again. Words on pages just are again.

Now it's about time. Time only goes one way. That is such an obvious feature of time that it doesn't need stating, but it suddenly seems all at odds.

I met someone today who is going through what I went through exactly a year ago. She is the same age that I was and at the same stage in her life. She has the same worries that I did. All those things I worried about! What a waste of worry. 

It got me thinking. As she heads into surgery tomorrow, I will be boarding a plane on the holiday of my lifetime. With Alfred. It's certainly an image that would never have seemed possible this time last year. 

There was no way for me to know what would happen to me next or how I would recover from the surgery. And I would still have the same worries if I did it all over again. But from where I am now it seems like a colossal waste. Of energy and time. How is it possible that I didn't know it would all turn out ok? Brilliant in fact. 

A while ago I made a conscious effort not to worry about things so much. There's nothing wrong with preparing for the worst but once prepared, no amount of worrying can help. It's not that easy though, I'm a worrier at heart. 

But back to time. I can't get my head around the weirdness of being able to look back and analyse, but not forward. Time is so weird and unstoppable. Elastic but relentless. 

It's like being on a conveyor belt, with a curtain of fog in front of your nose. You can't stop moving towards whatever is in store for you. Bit of a wobble? Peak or trough? No idea. All the twists and turns of your history are mapped out in detail, but really I just want a sneaky peak at whatever's behind the curtain. 

This time last year.

A year isn't an arbitrary number of days, but a full earthly swing around the sun. After a particularly painful relationship breakdown, I had some great advice that I think is applicable to any major life change: the first full year, with each annual event, resets the normal and allows you to move on. Birthdays, seasons, national holidays and anniversaries. We can't help but compare them to previous years.

It does seem arbitrary though, 365 days. 'This time last year' is something I've been saying a lot. We didn't know. We didn't know that I had a brain tumour and we didn't know how that news would impact us and what it would mean. We didn't know we would have a baby. Everything is different now, and I can't articulate how changed I feel.

All along I have been marking the time passed since my surgery on the 24th October 2012. It has recently struck me that that date isn't as important than the one looming now. The day everything changed was much earlier. In fact I can't pinpoint an actual day, but a steady build up of days.

Oliver's birthday (yesterday), followed by a family weekend by the sea (today and tomorrow), then immediately to a couple of days in Poland for work. And that's where it all kicked off with what I thought was a migraine in a hotel lobby. I'd been feeling kind of terrible for a couple of months but I hadn't really noticed it creeping up on me.

The emails I sent to work explaining my absence throughout the following week are fascinating to read back, and my twitter feed gives a somewhat simplified version of events:

• 21st September: dark when i leave work, dark when i get up for work. hope summer starts soon.
• 24th September: business travel on ryanair isn't quite business class. not that i'd know.
• 25th September: quite enjoying working in a hotel lobby today. particularly the soundtrack.
• 25th September: a triptan, 2 pints of water, vitamin c tablets, apple juice, spoon of marmite, prawn cocktail crisps. hot water bottle. bed. die: migraine.
• 27th September: in bed with a bag of peas on my head. @omorley is singing give peas a chance and i smell of peas. not in a good way. migraine, peas off now.
• 1st October: love the nhs.

I can't quite explain the fascination I have for this annual comparison. I continually marvel at the difference to today, but there is something else too. Would I go back to a year ago? Would I choose a different path if I could? No. I have developed as a person and learnt a lot about myself. It's been a worthwhile journey.

But it seems an anniversary to make a note of in some way. I feel almost tearful at the thought of this time last year, and as if I keep banging on about it. As per the advice above, maybe I'll move on after this. We'll soon have been through every annual event and the new normal will have been set. Time to look forward rather than back.

(There is no button and you can't go back.)

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.

Dreaming. And reality.

I can't help but compare pregnancy to brain surgery. They represent such different things in my life but the similarities are clear. Same hospital. Same sense of unknown. Same sense of waaaiting, and not feeling quite on form. It's like life is suspended for a little while until this big scary event happens, and then we'll take stock and move forward with whatever we're left with. In a negative sense after brain surgery, and a positive sense after pregnancy.

Getting ready for surgery is obviously a similarity and is bringing back some memories and associated anxiety. But this time I am really excited and actually can't wait: we'll get to finally meet whoever is in there. He can kick me just as well from the outside where I can see him. Time is moving really quickly now, and the last week has suddenly felt different. It is becoming real.

One big difference is dreaming. I remember thinking it was odd that I didn't dream at all in the run up to brain surgery (which was probably a good thing...) but now - jeez. Some really weird dreams have been going on. I disturb myself sometimes.

Actually, the dreams have been quite vivid throughout pregnancy, but it's only this week that they've become about giving birth and babies (or baby dinosaurs in some cases). Like I said, it's becoming real.

Things contributing:

1. Tomorrow, we're going for a 32 week scan at Kings so we'll get to see him again. I'm simultaneously really excited and a bit worried. Is this all too good to be true or is something horribly wrong that we don't know about yet? I think it's normal to worry a bit, and I'm looking forward to it being over just so the anticipation and anxiety is gone. I'm also really looking forward to seeing him - just to check he's really real. But 32 weeks! That's so very nearly 40 weeks.
   
   
2. Then there's NCT classes that we've just started a couple of weeks ago. The video we watched, and just very frank conversations with other pregnant people (and a collective sense of fear) has definitely made it more real.
   
   
3. And yesterday we saw baby H, a friend's lovely little boy who is now three months. I have seen him a lot but this time it just seemed to kick in more - we're going to have one of those soon!
   
   
4. Also excitingly, this is my last week at work. When I finish that'll be it - proper countdown mode.All the things I've meaning to do to get ready will get done, and then we'll be ready. Hopefully. Everything is finally getting there, the things we've been talking about for months are finally happening.

Despite the similarities with brain surgery and the impending sense of something momentous that we're hurtling towards, it is with excitement and impatience instead of dread and fear. It feels like we're suspended right now, but that reality is not far away. Bring it on.

A life in three phases.

In a discussion a long time ago, Oliver first introduced me to the idea that humans typically like to make patterns out of the data they have access to. In order to make sense of things. Things that happen to themselves. As a species, we would rather have a bad explanation for something than no explanation at all. (He can explain it much better than me, and I may have misrepresented what he said a bit here).

Since this discussion I have noticed I do it a lot. I always have some theory going on why I feel a certain way or think a bunch of things. On why my feelings or thoughts might change or take an unexpected turn. It comes out a lot in this writing, because it drives me to think about things so much... and assign wild explanations.

And so, I have created for myself a new life model that I'm feeling rather pleased with. Bear with me, it may take a while for me to get to the point.

Not long ago, I saw my life as a period of time up until the present moment only. I felt frustrated and frightened that it was almost over, that somehow I had wasted it. Made some terrible decisions and lost time in the wrong places. The future was invisible to me, something I didn't acknowledge.

Last year's brain tumour experience immediately jolted that view of my life into a totally new perspective. I suddenly saw my life as a much longer whole, extending way into the future and I was only (hopefully) a third (for example) of the way through.

Immediately I felt incredibly positive, in contrast. It was a very strange shift - instantaneous, and significant. One end of the spectrum to the other. I tried to explain this at the time, in a post about some of the positive parts of the experience (point five in the list). I realised that there was so much for me to still experience and learn. There's a lot of football to be played yet.

In the vast amount of self analysis and writing I did throughout that time, I started to think in terms of "pre brain tumour" and "post brain tumour" as a way of explaining to myself the different ways I had started to think, and in some cases, act.

I only mention this as I find it really interesting that I had this way of explaining things about myself, to myself, which worked very well for a short amount of time - until I found out I was pregnant. One small (but very significant) additional piece of information changed the pattern again. And now I have my new model. Here it is: my life, in three phases.

Phase one.
This phase is from when I was born until the day my first child is born. Overriding characteristic of this phase is selfishness, but not necessarily in a bad way. All I really have to do is look after myself. I can do what I want, go where I want, when I want, for whatever reason I want. I am bound only by the choices I make and the rules I choose to live by. But essentially, they're my choices. I am responsible for only me.

Phase two.
From when my first child is born, until all of them (eek) are grown up and "ok". There is a weakness in this part of the theory, which I am overlooking for neatness purposes. This phase basically boils down to responsibility for others. I am anticipating a big shock when our first child is born, that my first priority will for the first time not be me. I will need to forego sleep, independence and choices. I will make sacrifices - in terms of working and sharing food (I am Smithy in this clip) and plenty of other things that haven't even occurred to me yet. 

Although I am ready and willing to make these sacrifices, I won't really understand how it feels or how well I will do it until it happens. It will no doubt be difficult and scary - in fact phase two is the hardest work of all the phases (according to my model), but also the most rewarding. I get to see our children grow up, achieve things and become independent themselves. This is the goal of phase two, to give them the best possible start in life that I can, in order for them to successfully reach phase two, too. 

Phase three.
At which point, I will move on to stage three. Grandparents! This isn't just defined by my kids having kids, but more on them becoming settled and happy and responsible for themselves. There is the weakness, how on earth do you know when that has happened? (I know my mum still feels responsible for me now - but I think it will be just become obvious when the time has come).  

Hopefully by the time they do have kids they will be as settled as I am now. I think the relationship between us (me and my children) will change as they grow up and enter phase two themselves, and they become more aware of their own journey.  

And I can become selfish again, and do all the things I've been making a list of during phase two. It will be a time of enjoying a renewed freedom, as well as a growing family that all stems from our initial tiny family. Phase three sounds like awesome fun.

I realise I am writing this from a completely naive standpoint. People are keen to tell you when you're pregnant that you have no clue what's coming. Gleeful, and sometimes patronising, reminders that we don't understand how things are... yet. But that's the beauty of my model - it's just mine, so I can (and most certainly will) change it when I get access to more information. To help me make sense of what I am feeling.

But what's really great about this model is that I'm still in phase one - admittedly not for long... but there is so much more to come. Which kind of brings me back to where I started, the future suddenly is an exciting place, full of opportunity and fun as well as hard work and challenges. It's an action-packed future - there's loads of it still to be experienced.

This is in major contrast to my previous suspicion and bleak view of what's ahead, the future was something to be mitigated, prepared for, second guessed.

I'm really looking forward to the future it's going to be brilliant. But right now we have less than three months of phase one left, so I'm off to make the most of being selfish.

Scan results and a glimpse of the future.

This week I was back at King's to see the neuro team and hear about the results of the MRI scan. As documented here, I was nervous about it. It felt a bit like waiting for my A level results; someone, somewhere knew how I had done, it was all written down and in the system but somehow I didn't know myself.

A part of me didn't really want to know as it would mean confronting the possibility of bad news. And another part of me knew I was being stupid, it's so early, and these things grow so slowly, there was incredibly low chances of there being some tumour regrowth. It crossed my mind that I might be dramatising the whole issue somewhat.

I made a big deal about getting there on time, I didn't want to rush getting to the hospital as it stresses me out being late. I think it was easier for me to occupy myself with timings and logistics. Ridiculous. We were there early and the waiting room was packed and really hot. We sat in the exact same spot as I had waited alone, last time. That was the first time I articulated I had a brain tumour to a poor woman who offered me an epilepsy leaflet. It brought a lot of things back - how far we'd all come!

Waiting rooms are stressful places. We were under a telly that was on quite loud and I couldn't hear the names the staff were calling at the front. That stressed me out. And then a man had a fit and suddenly the waiting room sprang into activity. People moved chairs out the way, nurses came running with pillows and a screen. Wheelchair and stretcher lined up behind.

It can't be uncommon in that particular waiting room, but it didn't do much for the sick feeling in my stomach. I nearly started to cry - it's so selfish but I just kept thinking how lucky I am not to have epilepsy.

Then we were up, I was really glad to get out the waiting room. As we walked into the consultation I was at the front, Olly and mum behind, and finally the person who we were seeing. (I must try and remember their names when they introduce themselves, I have no memory of her name or what her job was). There was a picture of my brain up on the monitor, and it looked bad to me. There was a white band surrounding the area where the tumour had been. From my limited experience in MRI scans, white equals bad.

Interestingly, I don't remember feeling anything about this, we all sat down in a row and mum and Olly introduced themselves while I just stared at my brain. Blankness filled my actual brain. So this was it.

The first thing she said, while gesturing to the screen, was that everything looked great, clearly. No tumour remained, and the "post surgical change" looked fine. Oh. Did it? Mum and I asked the same thing at the same time - what was the white bit?! Post surgical change apparently, perfectly normal.

I was immediately incredibly grateful that I hadn't looked at the disc of the MRI scan I'd had at home for over a week. That white bit would have been grossly misunderstood by me and I would have had to live with that terror until this moment. Phew.

So that's the headline, we asked a few questions and she felt my scar and that was it. I'll be back for a scan in a year. A whole year!

At home I felt weird, I should be over the moon and celebratory. But I just felt weird. Ok so there's no tumour there now, but that's not to say it won't start growing tomorrow. In fact, maybe it has started growing already but is too small to detect.

It felt like a (just a) reprieve, and I got a glimpse of many years and many scans and many consultations to come, where the best news I can hope for is "not yet".

That was a bit depressing, in contrast to everyone around me being really happy. As always with this experience, my feelings are so complicated and contradictory. It's bittersweet.

So we did what anyone would do, went to the Dulwich Tandoori for tea. Sod the heartburn.

And in due course, as I should have expected, I feel better now. A year is a long time for my next scan, so they must be pretty confident. And it's long enough for me to forget about it, anyway we're going to be pretty busy come August with a new distraction.

Now, two days later, it's back to normal. I'll have a wobble every time I get results but its good to know how quickly I bounce back to normal life (assuming good news).

Reading and thinking.

A couple of things I've been reading recently have made me think. I have an obsession with reading news so this happens a lot.

Firstly the Boston bombings. In the following few days I read an article about people who had lost limbs, they were reported to be feeling lucky. The journalist of the piece I read expressed incredulity at this response, pointing out how unlucky in fact they had been.

This really reminded me of how extreme that feeling was in me after diagnosis and again after surgery. It wasn't just the fact that the tumour had been discovered before any permanent damage had been done, or the fact that my symptoms could have been so much worse or the surgery more debilitating. It was also to do with the way it made me assess things. Really strip back everything to see clearly what I need and want to be happy. Only to discover that I already had it - as well as so much more. So I was lucky to have it all, but also lucky to have now realised it, and on top of that the opportunity to stop taking it for granted.

It is complicated, but I'm still grateful for the experience and what I've got out of it, although I'm not sure if I would choose to have gone through it (given the choice). And I certainly wouldn't wish it on anyone.

So these Boston amputees, waking up with a limb or two missing, it would be understandable - expected even - to dwell on the fact that their lives have changed forever and they have a massive challenge ahead of them. But instead of feeling revengeful or depressed, they felt lucky. Lucky that they were still alive. To an outsider this seems mad. It's so impressive, human nature is really quite incredible.

Our experiences are very different of course, but I was struck by the similarity in unintentionally feeling the positives of a shocking situation. And looking to the future. Maybe this is just an initial response and it hasn't had time to sink in yet, but the resilience is inspiring.


The other thing I read was something that Richard Dawkins tweeted, from the NewScientist. It isn't new news as it was published in 2002 and I had read about it in a book called Incognito last summer, but this piece gave more detail. It's about a man, who's brain tumour caused a radical and sudden change in his behaviour, resulting in "uncontrollable" paedophilia. This behaviour (amongst others) stopped as soon as the tumour was removed, and in fact was a clear signal on it's return that the tumour had regrown.

There's a lot more to it, and it's interesting as it has moral implications as well as the standard side effects associated with brain trauma, but mostly it set me off thinking about my own experiences.

When I first read about this case, it was before I had discovered my own brain tumour and so, although I found it really interesting, it didn't have a personal impact. Now though, it reminded me again how lucky I have been. The location of my tumour was probably the best you could hope for. My concerns were all about permanent physical damage.

The fact that I didn't have to worry about potential changes in my personality or behaviour, is still such a relief.


Both these pieces just reminded me how things could always be so much worse. A gentle reminder of where I am. I don't want to live every day as if it's my last and to make sure I get the most out of everything I do - I just want to bumble along like normal. But it doesn't ever hurt to stop and remember all the good things.

Round and round again.

It's nearly time to go and see the brain doctors and find out what my scan said. I've reverted to type over the last few weeks and internalised the anguish I'm feeling and refused to think (let alone talk) about it. But I've finally noticed that that's what I've been doing, tried to work out why, and here I am writing about it in order to make the uneasy feeling go away.

I've spent some time today thinking about what questions I should ask. Which inevitably led to the same old cyclical arguments pinging round my head. It turns out that I've been quite successful in my plan to "not worry (think) about it until the next scan", so much so that my thinking hasn't progressed at all since I last thought about it. Which would make sense, seeing as I haven't thought about it.

Anyway. The same dilemma. This is how it goes:

1. First, I think, it would be useful to know some idea of precedent. In cases similar to mine (in terms of age, grade and location of tumour, pregnant...), what would they expect to happen? What is the likelihood of the tumour growing back? And where - in the same place? And when of course. And if it did, would it be likely to have gone up a grade? Or two?
   
   
2. Then, I think, would it really change anything to know how likely all this would be? It doesn't actually tell me anything concrete. Which of course nobody can do. Thinking through the options - if they say it's 98% likely to come back, then how would that impact on the way I live my life? Well, I think I would ignore the whole thing between scans and deal with it when faced with the results. Much as now.
   
   And if they say it's only 2% likely to happen, then I'm still going to wonder... And when scan time comes around go through probably this exact exercise again. There isn't much difference between those two extremes, in fact, in the way I would live.
   
   In addition to this, I think it would be better to go through life believing it isn't going to come back and then getting an almighty shock if it does. But dealing with it at that point and moving on.
   
   That would be better than living life in permanent expectation of a returning tumour - in order to minimise the shock if and when it does happen - only to find that it doesn't. I'd have wasted all that time and energy preparing myself, and who knows what opportunities I'd have passed up for an expectation that never materialised.
   
   And it's not like I can't cope with the shock, I've already done it.
   
   
3. The thing is, I'm used to looking at history to inform me of what to do. When I have a problem with a project at work, the first thing I look for is precedent. Has this happened before? Has anything similar happened? What was the solution, what worked or didn't work? This is all very useful information for creating a plan to move forward and resolve the problem.
   
   But here, there's no point having a plan as the precedent isn't actually relevant. In that it isn't directly applicable to me. It's just a possibility.
   
   So there isn't a plan, except to not have a plan. Unless the time comes when I need to make a plan, driven by scan results. OK, at this point, its decided. It wouldn't be useful at all to know likelihood of the tumour coming back. Job done.
   
   
4. Except it would be interesting to know right? Maybe with some idea of what has happened before...?
   
   
5. No, it wouldn't help. See above. End of. (Repeat).
   
   
6. At this point I have a little break from thinking, due to fatigue / banging head against wall. Then never really get back to it. Today I managed to get a bit of clarity and take it a bit further.
   
   
7. So I'm agreeing with myself, it wouldn't be useful to know statistics on likelihood of the tumour coming back, as only scan results can tell me what is actually happening.
   
   But what if the time comes when a scan does show some regrowth and I need a plan? What would the plan be? Here are some things I would like to know the answers to: how big would they let a tumour get before surgery? And would surgery be the only option?
   
   It's clear that surgery is my main fear right now, having to go through it all again - physically. But I'm sure in that situation it wouldn't take long for all the other fears to return.
   
   I think it would be useful to know now what the plan would be if that happened. And this is what I will ask about in the consultation. Also, what is the "detection plan" from now on - frequency of scans etc.

So, as things stand I have a few questions I would like to ask. All this assuming that my scan is clear of course. If it isn't then I guess I'll spring into plan mode anyway. Just have to wait and see.

I might as well get used to waiting and seeing.

Dramarama.

The last 18 months have been completely mental. In the best possible way, but with a few shocks and quite a lot of stress thrown in.

They say that the three most stressful things you do in life are get married, move house and have a baby. Add in a brain tumour for good measure, and we'll have done the lot in the space of a year and a half.

That was me trying to announce in a low key way that we're having a baby.

It feels like I've been hogging the news cycle for quite a while now, so it's taken a bit of time to decide if and how to drop it in to conversation. Obviously we're totally overexcited about it. If a bit nervous. Me that is. I think I mentioned before I'm not that good with pain.

I don't want this blog to become all about pregnancy and babies and stuff that, until a few months ago, bored me stupid. But I thought I should mention it as it has such relevance to the way I'm feeling and recovering. There's a good chance that Henrietta will in fact move away from the subject of brain tumours and recovery as I get further away from the experience, and I plan to use it to explore my thoughts and way of coping with what unfolds in my life. Pregnancy is just the thing that is fuelling my thoughts at this time. I'll try not to go on about it.

In terms of recovery though, it has been a great diversion from the trauma of last year and something to look forward to and focus on. I really think that it has helped me move on faster - especially mentally. I don't define myself so much as a brain surgery recoveree any more. Suddenly the brain tumour is old news, and we're on the the next episode already.

So last week we were at the hospital for a baby scan, and had some time to kill as they were running late. We sat in the hospital canteen contemplating that there aren't many positive reasons to be in hospital - we were probably the luckiest people in the room. It brought back a lot of feelings of the speed and confusion surrounding the week I was diagnosed. I'm so glad that it's over and we got through it and we're out the other side.

Although the contrast between our types of hospital visits are stark (I'm back in on Wednesday for an MRI), there is the same underlying feeling of not quite being in control - having to trust in the professionals. It's like I'm being carried inevitably forward on a conveyor belt towards whatever is going to happen next. Brain tumour or baby?

I feel like I have learnt a life lesson from the tumour drama - that despite my best efforts, I can't control everything. In fact there is very little I can control, but that's it's ok not to be in total control. It has given me confidence to let things just pan out, and chilled me out about not having a plan. That's not quite it, I still have a plan but it's pretty loose. I'll amend it as we go along. It's actually quite exciting!

Three whole months!

Well, who would have thought it - quarter of a year has gone by.

I thought there would be a point where it would all hit me like a dollop of porridge in Wallace and Gromit. I'd suddenly grasp the significance of what had happened and declare something profound and impressive. Or collapse in a heap of post traumatic depression.

But it's still as surreal as ever. I sometimes can't believe I've had actual brain surgery - it doesn't sound like the kind of thing that would happen to me.

Now that things are pretty much back to normal, as normal as they ever were anyway, it's got even more surreal. There's a chance that the dealing with it will still surface but I'm starting to think that's it. Just move on. No profound thoughts necessary, it's over now.

Anyway I'm celebrating three months with a packet of ginger nuts.





Update: As my very wise mother pointed out, I should really explain better for anyone in the same recovery boat as me - I'm not quite fully recovered yet. I'm utterly exhausted by the commute into work (which only involves sitting on a bus for an hour). I can't concentrate for more than about three minutes and my mind wanders horribly.

I think what I meant by being back to normal is that I am no longer dwelling on having recently had surgery, and I'm not defining myself by it so much anymore. I've really started to look forward to things and feel much more like me, inside. I'm just ignoring the exhaustion as it seems almost normal now anyway.

Also, I kid myself I'm better (as I clearly did in writing this) and then I realise after a day out the house that I'm not quite there yet. Nearly though!

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.