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.

Poor frontal lobes.

I got a hand written letter this morning on my way out the door, and it isn't my birthday. Intriguing. I read the bolded top line of the first sheet as I gathered last minute socks and Marmite sandwiches together, then stuffed it in a pocket to read later. It said this:

Study: Using virtual reality to investigate multi-tasking ability in adults with frontal lobe damage.

Excuse me? Frontal lobe damage? Whilst negotiating the front steps with a buggy and baby strapped to my chest, I furiously defended my poor frontal lobes. Damaged? Huh.

I'm all for studies, and I like that I could contribute to improving medical knowledge. And the virtual reality part sounds cool! But I'm surprised at how icky it makes me feel. I mainly plod along in life these days and don't often think about braingate, it certainly doesn't define me. Yet here's this letter. My name languishing somewhere in a database with a big red FRONTAL LOBE DAMAGE flag on it. That doesn't feel so good.

I'm going to do it obviously. just needed to get that off my chest.

A year off scans, yey!

Despite the law of sod, my scan was clear. Phew. It's always a bit of an anticlimax getting scan results, I psyche myself up for potential drama and then there's... nothing. Obviously that's a good thing, just a bit deflating and exhausting.

I noticed a few differences in the neurology department though. It was rammed. Proper Sergio Ramos. It's been busy before but this was something else, people were standing between the seats and spilling out into the corridor. Several consultants were running 45 minutes late. There was an air of barely suppressed panic, and not at all suppressed exasperation. 

One man wooped loudly for joy when his wife was called in, causing several chuckles, which was nice. And Rae made people smile too. 

And there was the inevitable man complaining loudly. But what I hadn't seen before was someone defend the doctors to a complainer. I've come across them loads in my nhs journey and always quietly seethed to myself. A woman properly told him, and I was full of admiration. 

It feels different, but it might be all the Labour leadership campaigning I'm reading. It feels like there is a real swing towards appreciating the nhs, by actual people using it, not just on social media. It's exciting. 

I was in with the consultant for about a minute and a half, we had precisely two conversations. 

1 - he said I was fine (that was the medical part over, in three words) and that next year (a whole year! hurray!) they would telephone me with the results in an attempt to reduce the circus in the waiting room. 

He said they were doing that for younger (oh, thanks very much, *swoon*) patients, with no complications. I said that sounds brilliant and that it must make things easier for the department, only to find out they are expected to do this on top of seeing the same numbers in clinic. Mental. I really don't know how they don't all have nervous break downs. 

2 - I asked how long I would get scans for and was told five years. And that's it, no more scans. I don't feel so great about that, to be honest. The original prognosis was 11% chance of regrowth in ten years, so what about the other five years, are they just going to not check? 

Of course I didn't mention that. I was aware of said circus in the waiting room and I was trying to process my thoughts quickly, so I just said ok. But now I'm worried about it. Which is ridiculous as it's still two years away, but I do like having something to worry about eh? 

Wavering smug face.

Today is my consultation following Saturday's MRI. Only having to wait two days for the results is brilliant, but I've been so confident about the outcome that I haven't even thought about it. Until now, 2:30am.

I'm confident because it hasn't been that long since I had a scan, an emergency one in April - fully convinced that a great big tumour had returned. I was wrong, the scan was clear. And I felt like a bit of a nob to be honest. 

I haven't been confident when receiving the results of a scan before. And what does the law of sod say about that eh? 

Don't read the internet.

A few weeks ago, I managed to thoroughly convince myself that not only had my tumour come back, but it had grown at super-speed and to terrifying proportions. What started as a few migraines, and a calm, logical thought process, very quickly grew into major hypochondria and internal panic, denial and general ridiculousness.

It's taken a few weeks for me to come to terms with what happened (which was absolutely nothing) and take a good look at my response to it. It feels like there is a lot to be learned from the whole experience.

The migraines and vision problems I had were (I think) justification for getting checked out, particularly in the context of pregnancy - there is a suggested link between pregnancy hormones and increased tumour growth.

My last pregnancy was so entwined with the experience of having a brain tumour that I can't remember it in isolation. The emotional recovery, and physical appearance (goddamn short hair!) was apparent throughout, and I actually found myself at the beginning of this pregnancy expecting a craniotomy to start me off. Yikes.

I think this may have played a part, it was like I was just waiting for it to happen. I read the absolute most negative possibility into everything that happened. The aura that comes with migraine? Must be tumour pressing on my optic nerve. I could go blind. How will I look after a newborn, blind?

And the final straw that drove me to middle of the night Googling (never to be recommended) was a numb hand. My right hand, for no apparent reason. This was what alerted my GP to the original tumour, loss of movement and feeling down my right side (also a common pregnancy thing, but I didn't bother reading about that).

By this point I had already had an MRI, and I was waiting for the results. I analysed in detail the behaviour and every single word the scan man said to me. It was ominous, I told myself, that he urged me to chase an appointment to get the results. He already knew by then what the scan looked like. And was that pity in his eyes...?

So I went home, cue major denial and didn't make an appointment. All the while absolutely convinced that I had a tumour and trying to work out how on earth I would manage with a toddler and a newborn whilst recovering from a craniotomy. Or maybe it was more serious than that and they would have to get it out before the baby was born. Craniotomy during pregnancy? Or have a very premature baby in special care? I decided the best thing would be to ignore it. Surely they would contact me if there was anything to talk about.

All the while people were telling me this was normal third trimester stuff, and logically I can see that it was. But I just knew it was a tumour, so I didn't listen. I spent a few weeks just not really thinking about it. And then I finally rang them up. The team explained that the scan was clear, they didn't want to see me, no need, nothing to talk about. Within minutes it was over and the full extent of my self delusion was exposed. What an idiot.

For next time, I'm sure there will be one, I plan to follow these simple rules:

1. if worried, get checked out
2. don't read the internet
3. get results quickly
4. do not read the internet

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.

It's that time again.

My next MRI is tomorrow. I distinctly remember the anticlimax of last year, I even wrote about it. It was no big deal. So why am I so worried?

I've been doing a lot of running recently, and one of the best things about it is time to think. I've not had much time to myself since the baby was born and so it feels like a real luxury to just think for a while. Inevitably at this time of year I've been thinking a lot about head scans, brains and tumours.

I'm not sure if I ever asked, or if I've just forgotten, but I don't know how a tumour starts. Like, why does it begin?

When I was 12 I skied off a cliff. It wasn't intentional; I was trying to avoid a tree. Obviously with a bit of hindsight it wouldn't have been so bad crashing into a tree - no helicopters, splints or head scans would have been involved. On the plus side, I actually own copies of my 12 year old head scans which is pretty cool. And there is no tumour.

So where did it come from? When did it start? Why did it start? Why has this not occurred to me before?

Last week I managed to think my way through a 40 minute run, comparing my tumour to the entire universe (the world does revolve around me, doesn't it?). Either, I thought, it was created by God one day, or... there was an almighty big bang in my head (the cliff THE CLIFF), and then the tumour existed. (I admit, there are some failings to this comparison).

Oliver thinks it was a cell mutation, which makes sense. But even if that's the case, it doesn't really answer my question. Why? Why did it mutate? And why that one, and right then, in that way?

The thing is, I could have all the information in the world about how and why and what to expect, but until anything shows up on a scan it is all theoretical. None of it is worth wondering about even, it's such a waste of energy and worry - until there is a scan to look at. And tomorrow, there will be.

What is also not helping is the fact that I've had three migraines in the last five days. Not really recovering from one when the next hits. The last time this happened I was shovelled into an ambulance and ended up having my head sawn open. Bodes well.

Another thing I've been thinking about is the person doing the scan. They can see the results as it happens right, so they know, like straight away, if there's a whopping great lump of something in your head that isn't supposed to be there. What a weird job to know that about someone and send them merrily off home again to wait for a few weeks until they called in. I don't think I'm going to be able to stop myself staring at them on the way out, to see if they have pity in their eyes.

Em arrrrrgh eye.

Yup. It's that time again. Next month is April, and it isn't April's fault but it has been linked in my brain to all things, well, brain. Poor old brain.

I have had a sudden flurry of NHS appointment letters through the door, scans, consultations and a meeting with the "headache clinic". That one was a coincidence but somehow adds to the pressure. When I say scans, I mean scan. And consultations, consultation. I don't know why I feel like exaggerating things. Maybe because I know it's no big deal really and I'm trying to justify the panic.

I don't really need to write this post, I could just look up the one I did last year and copy and paste.

As I get further from the actual experience of brain surgery it gets more surreal and quite frankly, unlikely. It feels like something I made up once to tell strangers at a party in a bid to sound more interesting. Plus, loads of stuff has happened since then, like Alfred and... yeh just Alfred. But he's a big thing.

I'm rambling. As it feels so unreal, that doesn't quite align with physically going for scans and meeting with brain people. I really really really REALLY hope everything's ok.




PS. Pleased with that title. Just made myself chuckle. Yep, still got it.

Stupid brain.

And so it begins. I have become incredibly skilled at compartmentalising worry. I used to be a right worrier, always planning and worrying. Worrying and planning. What if I'm late? What if I've got the wrong present? What if it rains? What if my brain tumour grows back?

I have learnt to let go of the worry by either working through the logic (take an umbrella, nobody will die) or by accepting there is nothing I can do about it (I might die, how will worrying help?). 

But sometimes I just worry. Before I've remembered that I don't worry anymore. 

Yesterday I got a migraine. Not like the ones I had during pregnancy, when a few paracetamols and a bit of sleep would sort it out. One like I used to get, back when I had a brain tumour. 

In the depths of a migraine it's difficult to act normally. The all encompassing pain, disorientating loss of vision, the full body sickness and something else indescribable makes me not quite function properly. I can't make decisions, I forget which drugs to take, I fumble and mumble and worry. This canNOT be normal. 

And so it begins. 

With the darkness surrounding the episode I am hardly at my most rational. I'll be fine tomorrow but I wanted to capture it. It's back, I can tell. I'm going to walk over the road and ask nicely for an MRI. Then I'll know. I'll be able to see a big white blob. A reason, an answer, everything fitting neatly into boxes with answers and solutions. (Although let's not think too much about solutions.)

I know it's ridiculous. But The Feeling is back, the gnawing, dawning, whining worry I must ignore to carry on. 

Roll on tomorrow, and normality. 

Ah yes, and HNY everyone, may 2014 treat you kindly xx

Stranger than fiction.

Last night I dreamt about going into surgery. Now that it's happened I realise it's a surprise that I haven't been dreaming of it all along. It wasn't a nightmare, or particularly scary, just all the mundane things I had to do to get ready to go in. 

I was really annoyed that someone wanted to use the plastic bag I planned to pack my underwear in...

Anyway.

It's not really surprising that it's in my subconscious now. I've been talking about it a lot over the one year mark. And I've also been in touch with a few people who are going through it right now. Weird how it all happens at once, I didn't hear from anyone all year and then a few all within a week. 

So I read some of the old posts back to see what they had been reading, and it's so strange to try and remember what that all felt like. It's mad, that I went through that. I don't really think about it any more, and when I do it's like telling a fictional story. Not a reality that was my life. It was surreal at the time, but even now it is no less surreal.

Reading it back is fascinating! I can see what everyone was going on about now, even though I find it quite cringe worthy.

Reading it last thing before going to sleep (ha, what is sleep please?) obviously planted it in my brain. But interestingly this dream wasn't about the surgery I had, it was a new one. People were commiserating that I had to do it again. I hope this isn't the start of me worrying about it growing back.

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

Walking cliché.

I met someone on the bus the other day and we ended up having a right good chat. She was massively pregnant and I had a tiny Alfred strapped to me so we got talking about stuff. The King's post natal ward, NCT, breastfeeding. Lack of sleep and new babies. 

It was so clichéd. The whole situation was clichéd but worse than that, almost everything I said was a total cliché. 

What has happened to me? I fought against it during pregnancy but now have to accept that almost every cliché I've heard has proved true for me. I am unable to remember anything. Names, where I left my keys, which boob Alfred *just* fed from. I believe my baby is the best baby of them all. I now realise what my parents went through and am ashamed of how I've behaved over the years.

Thinking back to tumourgate (tunagate?) it was the same - I lived the cliché. When an extract of this very same blog appeared in the Guardian, the online version received an angry comment (since removed) about how clichéd I was. Spouting about how lucky I am and perspective and family... very dull but also true. 

I wonder if I'm just identifying with the clichés that apply to me, but it seems that clichés are pretty much spot on in general. I am a walking cliché. Not so long ago that would have pissed me right off, but I'm too tired to care now. 

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! 

Who am I?

It's been so long since I felt like me, that I don't even know if I would recognise it anymore.

I wish I'd had some warning, something to tell me to take a good long look at things as they are now, because it won't ever be the same again. I remember wishing I'd taken more notice of the way my head felt before surgery. Without bumps. And similarly I wish now that I'd really taken more notice of what life was like before any of this happened. Easy to say, looking back.

A couple of headaches, to a horrendous time preparing for surgery, to frustrating recovery, to being pregnant, to now. There was a time when I thought things would get back to normal after the surgery, and I even went running (about 200m but I was still quite pleased), but then I found out I was pregnant.

Things will never be the same again, and I will never be the same again.

Being pregnant is brilliant, except it isn't. Being pregnant is the promise of brilliance, without anything actually very positive happening. That you can see. Obviously something very positive is happening far out of sight. On the surface, it is physically hard and emotionally hard.

It isn't really the done thing to say negative things about pregnancy but Tanya Gold has inspired me.

I'm not me any more. I don't feel like me, I don't look like me (stupid hair) and I can't do any of the things that I would normally be able to do if I was me. I am weak, I can't sleep so I am permanently grumpy and I feel (although I realise this probably isn't happening it's just the hormones and lack of sleep paranoia) that noone is interested in me any more, other than things to do with the pregnancy. And I hate being so dependent on people.

I can't wait to have a baby, I can't wait to meet him and I can't wait to be one person again. Me.

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.