Monday, November 25, 2013

The unexpected.

When I was pregnant I had a book that told you what developments the baby was going through week by week. Each week I read the relevant bit and wondered. That's the only pregnancy / baby book I've looked at though, I shunned them all when he was born.

Being what some might call a control freak, I felt like I was expected to fail at being a parent. Things are impossible to plan, they said. And I do like a plan. So my plan (haha) was to empty my mind of expectations and just bumble along. See what happened.

So far that has worked out really well. It's always news to me when people tell me how much a three month old 'should' be sleeping. (Or eating, pooing, weighing, rolling, laughing, focusing, batting things, meh). I have no idea how much he sleeps, he just does it when he feels like it and so far that has fitted in quite luckily with when I feel like it. 

I like having no normal to compare him to, we just do what works for us. And so having no expectations has worked, in that sense. (I did read one paragraph that told me if I failed to get him on a strict schedule by 12 weeks he would grow up unable to hand in homework on time. I think he may have inherited that from his parents though already. That book went in the actual bin).

But what's funny is the expectations I had about myself that have turned out to be way off the mark.

Firstly, boobs. It is baffling to me (at this point in my life) how boobs are considered in any way sexually attractive. They are clearly functional (and really, not very attractive) things, how did I never consider this before? I had assumed I would find it incredibly embarrassing breastfeeding in front of people. My friends' husbands, or my brother(s) in law(s) especially. But it's mad how I just don't care. I need to feed the baby, and this is how he gets fed. 

The day before I had him, I remember thinking I would never be comfortable with it. I'm generally the one at the beach in a full head to toe outfit in case someone gets a glimpse of unsightly flesh. But the day I was released from hospital, the hour I was released in fact, I sat on the sofa at home facing the bay window onto the street with both boobs out, just not caring. Who would have thought?

And then there's work. I've always liked working and being useful to people. I know it's like a thing that people go off and have a baby and then suddenly they don't want to come back to work. Eye roll. Typical. Extending maternity leave, then going part time and before you know it they're off again having aNOTHer one. Eye roll.

So I'm thinking about extending maternity. I'd genuinely expected to be different. I love working, and I do miss it. But I love Alfred too and he won't be this little ever again. Work will always be there. Argh I'll just stop trying to explain it, you either already have a kid and understand, or you don't and you won't. It's just annoying that I'm so predictable. 

And worst of all, the other day I caught myself in a pub showing someone a video of my baby. That is not cool. (It is brilliant though, he does four massive farts in a row). Not cool.

I've never been much of a fan of babies in general really, except for my nieces. Pretending babies are cute, when in fact I find most of them a bit funny looking, is just tiring. And a bit patronising. I hoped that I wouldn't find Alfred funny looking, and I don't - he's the best looking baby of them all. Obviously. What I didn't expect was that I would now find all babies cute. That must be some kind of nature thing to make you carry on caring for them when you've had no sleep for months.

But overall I think I didn't really expect to be any good at this. The truth is I'm really enjoying it and Alfred seems to be happy enough too. Things have really changed around here (I'm just about to put the third wash on today) - I would never have believed it of myself. We're actually doing ok.

Tuesday, November 12, 2013

Bah humbug.

Being kind of Jewish, we didn't have Christmas when I was growing up. We had Hannukah (or Chanuka etc) instead, which was great, actually. I remember it as a really cosy idyllic family moment when it's dark outside and the fire is roaring in the hearth and we're all sitting around together. I'm sure it must have happened like that...

Anyway, I remember vividly the scorn I felt each January on returning to school. There was an annual competition to see who had the best Christmas presents. A bike? Just for Christmas? A telly? We didn't even have a telly and you got one just for you, for your bedroom? A video player?!

I told myself they were spoiled brats and materialism couldn't bring you happiness. So I told myself.

Throughout my university years I never went home for Christmas. I stayed behind and worked for double pay at Pizza Hut trying to guilt customers into bigger festive tips, and fed my friends' pet rabbits while they were away. I had a brilliant time.

Although I had no interest in Christmas, apart from the Christmas television schedule (I had one by now), I couldn't help feeling a self indulgent longing as I walked past houses with fairy lights and a warm glow seeping through the curtain gaps. It was mostly pretend longing though, like staring wistfully out of train windows when you're absolutely fine. I wonder how much of my life I live as if I was the central character in a film?

Fast forward to grown up years in grown up relationships - I am actually married I have to remind myself - and I finally do have a Christmas. Having done my best to resist joining in, I find myself actually enjoying the family get togethers and holidays-are-coming feeling. I love the communal cooking and the big family dinner and the stupid hats. I like sitting around afterwards with everyone, drinking wine and eating cold roasties until it hurts.

What I don't like is the presents. And here is the rant I've been building up to.

Firstly the pressure. I have been feeling it for months already and it's only just November. What the hell are we going to get everyone? The closer we get the more the panic sets in.

Secondly the guilt. What if our present doesn't match up to their present? Or what if our present totally crushes their present and they feel guilty? Either way you can't win, I feel the guilt.

Thirdly the cost. The more the panic and impending guilt sets in, the more likely I am to just buy something expensive to make up for lack of time and creativity. Cue more guilt.

Fourthly the sheer waste of it all. I would like to bet that the majority of Christmas presents go to that special unwanted present place in the sky. I'm not sure what's worse, giving a present that doesn't make the grade, or receiving one that doesn't. It's awkward. It makes me awkward. I don't know how to arrange my face.

I think I'd rather a more open system if we do have to do Christmas presents. Like a secret Santa type thing where you only buy one present for one person, and they buy one for someone else. Except it's not secret and you're allowed to confer. Wisdom of the crowds would hopefully help ensure that the present hits the mark.

Or alternatively everyone comes up with something that they want, and everyone else chips in to buy it for them. I spose the surprise element is somewhat missing though. But at least you'd get something useful, and you'd be contributing to something someone really wants. Warm smug glow.

Or what if we just all went out and bought ourselves something nice...

But this is my favourite idea: it's supposed to be the thought that counts right? So can't we just leave it at a thought? Let's all have a thought for each other and spend time together and enjoy each other. That's what I want for Christmas.

Oh and maybe a onesie.

Wednesday, November 06, 2013

Work rant.

Since I've been off on maternity leave, work has been playing on my mind. There is a massive global "company restructure" in the offing, and whole departments have been demolished. My department. And my team has already limped into obscurity. I thought it was odd my role didn't warrant maternity cover, and then my boss got "reassigned" just before I finished. That left one person... who subsequently moved on within weeks. So I'm waiting for a phone call.

I think it's unlikely I'll be made redundant, but given that I don't technically have a job right now I've been doing some thinking. What would I choose to do - if I had the chance to completely start again?

I'm dead jealous of Olly, he loves his job and has a great time doing it. He's so passionate about it he would rather work than be on holiday. I'd like to do something like that, if only I could discover what I enjoy.

I love being at home with Alfred. We've had such a good three months, way better than I was expecting, and I was expecting it to be pretty good too. We've done so many things and met so many people. Everywhere we go people want to know about him. And he smiles at everyone. He's great. And I don't want to miss any of his growing up.

Having said that... I miss work. I miss being on time and in control. And busy in a way that isn't to do with housework. Also, it's still a novelty (not being at work) which may well start to wear off soon.

How to combine both? (And earn enough to live on?)

Seeing as the movie rights to my life haven't been sold yet, and this blog doesn't make any money, and I can't think of a creative idea to write a book about, I'm going to have to do something employment wise. I've been looking around at ideas and I think I've had a good one. Not for me, but a company called Pepperberry. They specialise in making clothes for women with bigger boobs.

Rant warning! Coming up, a big old rant.

I contacted them last week with this idea which I thought was a no brainer, annoyingly they don't seem to understand and aren't interested in listening. The whole experience made me feel really helpless and frustrated. If this was my company I would jump at the chance to talk to people who want to contribute ideas. In this case I got stuck at the first line: customer service.

My idea is this. When people have a baby, they make loads of milk and consequently their boobs get bigger. If they breastfeed then this could be a long (ish) term effect (enough for them to have to buy new clothes to fit). This is potentially huge for Pepperberry, they get extra spend from existing customers as their size has changed, and they get incremental spend from brand new customers catapulted into the bigger boobed bracket.

We are now officially in a baby boom so this could be a big market. And in general the age that women have babies is being polarised, either really young, or (I hesitate to say really) old. Like me. I'm old enough to have a good job (still, hopefully) and enough money to buy nursing clothes.

Except - and here is the killer - they're isn't much out there to be found.

Pepperberry already specialise in one of the two requirements - clothes for bigger boobs. All that's missing is the ability to breastfeed in these clothes. No. Brainer.

My first reply from them explained that "Unfortunately we have no current plans to expand our range of styles to cater for maternity swimwear at present and I realise this will be disappointing for you". Well yes, I am disappointed - you clearly didn't read the email I spent ages composing. Maternity? Swimwear? Where did you get that from?

So I sent a quick reply just to clear things up, but didn't get any further. 

On the plus side, the whole experience made me realise something. Strategically, for Pepperberry, this would have been a good move to make (I believe), and setting it up would be a challenge. I would love to be involved in it. It made me see that I'd like to have a more strategic role, to be involved in something more fully, rather than just being a little cog sitting at a desk.

So I'm still thinking.

Thursday, October 31, 2013

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...


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.

Thursday, October 24, 2013

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

Monday, October 14, 2013

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. 

Monday, October 07, 2013

No words.

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

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

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

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

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

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. 

Saturday, September 21, 2013

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 Septemberdark 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. 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.)

Sunday, September 15, 2013


Sleep. Humph. I've got a difficult relationship with sleep. I used to take it for granted - in that I never used to think about it. I'm not sure when that changed but 'thinking about sleep' is something I do pretty much all the time now.

Through teenage years I was nocturnal whenever I didn't have to get up for something (school was such an inconvenience) and the rest of the time I was exhausted. It felt like I could never catch up. But it was at university that the insomnia started, brought on by stress of course work and stress from a bad relationship.

It seems like an old friend now, the insomnia. It is strange to be really tired, but not able to sleep. And it's like a vicious circle, the more it happens the more frustrated I get, which clearly doesn't help anything.

Over the years I've blamed many things (the bin men, the radiators, the cat, the husband, work, the sunshine, the mattress, the birds, the neighbours, the weather, the pregnancy, the baby - I actually could go on...) but I think it's time I just took responsibility for the fact that I am rubbish at sleeping.

I love being in bed. Big feathery quilt, lots of pillows and a good book. Especially when it's cold outside and I'm snug and warm. But sleeping? Somehow it doesn't quite make the top of the list of priorities.

I am the tiredest now that I've ever been in my whole life. By a long way. I can't make decisions and I feel spaced out. But I also feel fine. Apparently you get some hormone thing with breastfeeding and whatever it is, it's great. I haven't slept more that three hours in a row for six weeks and rarely more that five hours in total a night. But, somehow, I am not only functioning but I feel fine!

Everyone likes to say that you should 'sleep when the baby sleeps'. I have two problems with that. Firstly, when Alfred is asleep during the day, I finally get to run around and do all the things that you need two hands to do. Like go to the toilet. And hang the washing out. And also, read a book. It's the time I get to myself, to look at cats on the internet and take the two month old toe nail varnish off.

Secondly, the problem is waking up. I would rather die than wake up these days. It is so painful that I'd really prefer not go to sleep in the first place. The notes I wrote for this post (not really notes, just ideas I write down on my phone whilst feeding in the dead of night) say "But what the hell is this hell?" - crucially I only feel like that when I've just been woken up, five minutes later I am fine.

We have a funny old system for restoring ourselves. Sleep is fantastic when it works, but what if you could just take a pill and immediately feel the restorative effects of a full eight hours kip? Wouldn't it be good if evolution did away with the need to sleep? Or actually, maybe just the waking up part...

p.s. You know when you look at a word too long and it starts to look really odd and you begin to doubt that you've spelt (spelled?) it right or that it's even a word in the first place? How weird does the word 'sleep' look? Is that right? Sleep. Sleeeeeep. I think we all know what I should be doing right now.

Monday, August 19, 2013

Human magic.

The human body is amazing. The capacity we have to heal (physically) astounds me, and I've had more opportunity to witness this in the last year than the rest of my life put together.

Just over two weeks ago I got out of bed and walked, took my own thigh high stockings off (not as glamorous as they sound, and also not an easy feat at the best of times) and showered - less than 24 hours after major abdominal surgery. Nearly ten months ago I walked home from hospital two days after having my skull sawn open. That's mad. 

And then there's Alfred. My body grew him, from, like, what exactly? He didn't exist at all, and then a little sac existed that he would grow into, and then he slowly started to exist. And suddenly here he is, fully formed. He has forehead wrinkles, and knuckles. Already there. And he knows to rub his eyes when he's tired. How does he know that? Where there was nothing, there is now Alfred.

There are so many cliches around having a baby. I found them all incredibly dull before Alfred arrived, and am slightly piqued that many are turning out to be true. One thing that we were consistently warned about is how fast he would grow. It's incredible. His face changes daily and he has grown out of clothes already.

Before he was born I had this wonderful plan to take a photo of his face every day so that we wouldn't forget. Except I keep forgetting. I am torn between wanting him to stay this little forever and wanting him to be grown up so I know what happens to him, what he does and what he's like. It's slightly terrifying how much of a blank slate he is right now, and the thought of the tightrope we have to walk in order to give him the best launch pad. 

Either way, he is growing. At quite an incredible rate, it's like magic.

Friday, August 16, 2013

The value of NCT.

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

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

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

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

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

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

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

Wednesday, August 14, 2013

Special delivery.

It was impossible to imagine having a baby. Not the act of giving birth (I spent a lot of energy trying not to imagine exactly that), but having another person living with us who we would be totally responsible for.

It was incredibly surreal as we approached the end of the pregnancy, especially given that we knew when it was all going to kick off. Everything became a countdown, but with no knowing what the other side would be like. I was excited, but just couldn't get my head around what it meant.

And now we're here, the other side. Alfred Morley was born on Friday 2nd August at 9:52am. He is brilliant. We've been home just over a week now, and although I am tired and tend to burst into tears twenty times a day for no reason, everything is going really well. He eats a lot and sleeps a lot and spends the rest of the time looking around in wonder with massive brown eyes. He is impossibly tiny, a tiny human.

What is strange is how normal it all feels. Except normal isn't really the right word. I don't think we have any concept of normal anymore as everything has been so weird for quite a while. It feels right though. Can't ask for more than that.

Alfred Colin Morley.

Monday, July 29, 2013

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! 

Wednesday, July 10, 2013

Fish and chips.

Growing up in a small village just north of Whitby on the north east coast of England, I took a lot of things for granted. I was invariably irritated by the way village life means nothing is private, by the sporadic, limited but extortionate bus service, by the lack of jobs and by the permanent freezing wind. It was easy to feel trapped and want to escape into anonymity of the big world as soon as possible. Which I did.

I left after A-levels and didn't hang around to find out the results - I knew it wasn't going to be pretty. And I moved around quite a bit before settling in London. Now that I'm here I really appreciate the things I grew up with - even if I didn't realise it at the time, it was a brilliant place to be.

The sea, on our doorstep. I love the sea and spend a lot of time trying to convince Oliver to come to a beach - any beach - with me, to smell the air and feel right at the edge of the world. The woods, also on our doorstep. We had a den, we actually had the best den in the village and it had a trap hole and an escape route and we threw poisonous berries at people who walked past. The weather, for those few weeks every summer when is was just perfect. That actually did make up for the rest of the (hurricane-like) year.

The pubs - it has been said that there are more pubs per capita than anywhere in the country, although I've since heard that said about many other places so maybe it isn't true. But anyway, the pubs were good in Whitby, for a teenager (although not the - singular - club. Unless you were 14).

And the fish and chips. I cannot believe how I took this for granted. We had a chippy in our village, and it was really good. Still is actually. Sometimes I would have a second tea from the chippy with my friend Sue. I guess I just thought that everywhere was like that. But sadly, I was wrong.

I've lived in various places abroad which could be forgiven for not having fish and chips, but also in Newcastle, Sheffield and Nottingham. Not to mention various boroughs of London over the last ten years. Nowhere can I find a decent fish and chip shop. Even at the coast, I've tried Brighton (good effort) and Bournemouth (don't even bother) and recently somewhere in Suffolk (quite good) but nothing really compares to Fuscos in Whitby. Cod, chips and scraps. With a nice cup of tea and a slice of soft buttered white bread. Seriously. What else could you ask for.

People think I'm joking when I say that you can't get decent fish and chips outside Whitby, but I'm not. I mean it. You can't.

Tuesday, July 09, 2013

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.

Monday, July 08, 2013

A jumble of thoughts on being pregnant.

Maternity leave is frigging awesome. Especially in July. There are so many things to do, I don't know how I had time to go to work before.

I always thought I'd be rubbish at not being at work. The thing is, I've never really been one for housework, so the thought of my days being taken up with clothes washing and cleaning has never filled me with much enthusiasm...

When I was off sick I didn't really enjoy the time I had off. It wasn't a holiday and I felt quite guilty. I couldn't allow myself to do anything fun and actually I felt like shit most of the time so I wasn't really up to much. This time it's different - technically I'm on annual leave at the moment anyway so it really is holida-ay time.

The British weather has really pulled one out the bag - although eight and a half months pregnant in this heat is not quite what I had in mind. Still, it's brilliant. Everything seems so much better when it's sunny. And it's amazing how quickly washing dries in the garden. Who knew?

Seeing friends and family, reading, watching Gossip Girl (I finished Dawson's Creek last week) and generally hanging about in the garden or at Olly's office is really time consuming. But it's great to not be at work as I am so tired. It's brilliant not having to concentrate on anything very hard.

Despite digging my heels in stubbornly for the last half a year, I have had to admit that I have indeed succumbed to the most obvious of pregnancy cliches. I am an emotional wreck. I cried at a bus advert last week, and those charity adverts with homeless dogs in them? Oh dear. I don't even like dogs.

Also the cleaning. I really thought this one would pass me by, but today I felt an irresistible urge to wash the sofa cushion covers. So I did, then hung them out on the line in the garden, and then put them back on (Cohen 1 - 0 Sofa Cushions. But it was a close call). I am right now sitting on the nicest smelling sofa - quite smugly if truth be told.

And much as I hate to admit it, I suppose I have been quite forgetful and a bit vacant. But I will never as long as I live accuse someone of having baby brain - it's so annoying. I will also never touch / rub / pat someone's tummy (pregnant or otherwise) unless I am in a relationship with them or they're a cat. Or they have asked me to - but even then to be honest I'm not sure I would.

So frighteningly, it appears that I've finally got myself motivated and I've got some hoovering to do. I'm actually looking forward to it - I don't know what I've become. Just in time too, it's the final countdown!



Sunday, June 16, 2013

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.

Saturday, June 15, 2013

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.

Monday, June 03, 2013

Nothing much to report. Funtimes.

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

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

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

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

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

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

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

Thursday, May 16, 2013

A controversial decision.

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

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

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

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

A few different things contributed to this decision. 

Past experience of childbirth.
I am very close to my sister and was there for the births of her two daughters. Both were traumatic, and ended in emergency sections, for different reasons. The second in particular was touch and go, with both their lives being in quite some danger. I know this has no bearing on how childbirth would be for me, we have different body shapes (people have been known to mention my "child bearing hips", much to my delight) and we are different people. 
What happened to my sister is unlikely to happen to me. But it isn't just my sister, it's loads of people. I don't actually know one person who's giving birth experience wasn't traumatic. This isn't a good thing in my book, especially because...

I'm a chicken.
I have always been afraid of pain, and childbirth is well known to be painful. Obviously I realise that people have been doing it for ever. It's a natural process that the body is perfectly designed to manage. Pain relief or no pain relief, this is arguably what I'm here for. But I really don't want to do it. Just thinking about it makes me really anxious. 
I know I could do it if I had to, last year taught me that. But if there is an alternative then I'd like to take it. Last year there was no alternative, and that was a horrible feeling. I had to be brave and I had to agree to my skull being opened. There wasn't another option. 
Clearly, a caesarian will hardly be pain free, but it's a pain that can be anticipated and understood. And prepared for. 

I want to know what to prepare for.
Childbirth is unpredictable. And unknown things happen. I don't know where to start in preparing myself for it, or for any of the things that can go wrong. I feel that choosing to have a caesarian from the outset means taking control. I can prepare for the operation and can look into exactly what it entails and how to best be ready for it, and best recover from it. 
An added benefit is that I'll know when it will be in advance, so we can make sure we're ready for whoever is going to be joining our family, and I can plan properly. We also won't have lost a night's (or two nights') sleep labouring. Although I reckon maybe lost to nerves instead. 

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

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

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

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

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

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

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

Tuesday, May 14, 2013

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.

Wednesday, May 08, 2013

Good eggs.

It's struck me recently how great people are. There are clearly some pretty nasty people around (the news this week is full of sex offenders and kidnappers) but when you meet a good one (Olly calls them good eggs), it has the power to reduce me to tears. Although most things do now, thinking about it.

The masses of people, some of which I'd never met or heard of, that sent well wishes when I was ill was astounding, and played a huge part in keeping my spirits high. But it's some individuals who really stick out as having made an unexpected difference.

Here are just two examples out of the many.

My hairdresser. I'll always remember how well she dealt with the whole thing. Didn't make a fuss, just cut all my hair off while I sulked. She continues to be wonderful and just make life easier for me, I don't have to explain why my skull is bumpy. And she gives me a discount - just because.

And my support nurse, I've mentioned him before I'm sure, he's consistently gone beyond the call of duty throughout all of this. Out of the thousands of patients he must have seen since me - and I was only in for two days - he firstly remembers me, and secondly is so goddamn efficient. This week he personally helped me try to tackle the DVLA (although it will still take them six weeks to look at a fax - a FAX, like how last century? Just LOOK at it people. And give me my licence back grrrr. I cannot resist a DVLA rant whenever the opportunity arises) and then emailed me to tell me what was going on.

This isn't new but has been repeatedly obvious to me over the last six months. A spot of kindness when you're least expecting it can make someone's day. Maybe even make a real difference to how they're feeling and will subsequently cope with a situation they're facing. You just don't know what anyone else is dealing with, so on the off chance it's best to be kind by default. I'd love to have that kind of influence on someone else.

Wednesday, April 24, 2013

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).

Some good things.

It's only gone and been half a year already. Today is the 24th, which, aside from being a six month marker from surgery, is payday. And sunny. And on top of all that we're in Brighton, so good news all round really.

Sunday, April 21, 2013

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.

Saturday, April 20, 2013

Email out.

I've become a bit more self conscious about writing again. Hopefully that will disappear as I get back into it, but in the meantime I'm going to turn off the email function of Henrietta. After this one, posts will no longer be emailed out - although obviously they are still open to all at

Thanks for signing up in the first place.

Tuesday, April 16, 2013

Do I really want to know?

Yesterday I picked up a disk from the hospital with a copy of my MRI scan on it. It only took them a day to get it printed for me, and seeing as I paid an annual fee for a full copy of my records there was no additional charge. The Patient Advice and Liaison Service at Kings have always been brilliant and helpful and polite. But I wasn't expecting to have the disk so quickly.

I'm at work now, and I'm still thinking about that disk, burning a hole in the kitchen table.

I haven't looked at it. I wouldn't know what I was looking at. And I would run the risk of scaring myself stupid over nothing. But it's funny (strange funny, I'm not really in a laughing mood) to think that the answers to the biggest unspoken question of the last six months is lying on my kitchen table. Just minding it's own business.

This is only the morning after I picked it up. How on earth am I going to concentrate for over a week until my consultation?

Thursday, April 11, 2013

What it's like having an MRI.

I don't know why I had built this up as something to worry about. It was just a scan, I don't get the results for a few weeks so it seems silly now to have been quite so apprehensive.

Lots of people have asked what it's like, and I remember thinking the first one wasn't at all how I expected, so I thought it might be worth explaining how I find it.

The first time, I was already in hospital so I didn't really have to think about it - I was just wheeled down on my hospital bed, in my pyjamas. Luckily my pyjamas don't have any metal in them so I just had to wrestle with my toe ring (no mean feat after wearing it solid for 10 years, apparently my toe has grown in circumference), and the preparation was done.

This time, I had to plan my outfit as I didn't want to have to get changed into a hospital gown. No metal is actually quite difficult. No bra underwiring, no studs in jeans, no poppers, no shoes with eye holes. And obviously no jewelry. I wore leggings and a dress and some kind of sporty underwear (don't ask). It was worth thinking about as it meant I could just be in and out, no delays. They have lockers I think for you to leave things in, but I took my mum who held on to my toe ring for me. Which was beyond the call of duty really.

The staff, as always, were very friendly and approachable. They were quite busy yesterday but saw me quickly, and still made the effort to make me feel at ease. They really do make things so much easier.

Paperwork in the form of explaining whether I had metal implanted in me through a welding incident or a heart operation (neither, thankfully) gave me the all clear the first time, and in I went. I had a cannula in my arm already through which they injected some contrast half way through in order to see things better. This time, things were bit more complicated given the metal clips in my head and the fact I'm pregnant, but they just needed to know details in advance.

The machine is just a big plastic thing with a hole in the middle - like a massive polo mint - and a bed poking out of it. My scans have all been at the neuroscience department so maybe they only do head scans there. You put your head in a comfy bit at the end of the bed (nearest the machine) and they give you some ear plugs. They pack sponge type things against your ears too - I think this is to minimise movement as it is quite a snug fit after that.

Finally they put a kind of mask over your face. I wasn't expecting this and it was a bit of a shock the first time. I remember thinking it was a bit like the mask Hannibal Lecter wears in Silence of the lambs, but after yesterday's scan I realised that my imagination had run a bit wild in the time gap. It's just a frame really, and it's about an inch away from your face. A bit claustrophobic, but if you close your eyes then you can pretend it isn't there.

The you get an alarm button in your hand and the bed is pushed into the hole. Then the fun starts. Everyone leaves to go into a room with a glass screen but they can still talk to you through an intercom. You have to try not to move and inevitable get an itchy nose immediately. Then you need to swallow, and your eyes won't stay comfortably closed - they flicker and you twitch. It's hard to relax and in the middle you find your shoulders are tense but you can't relax them as that might make you move...

It's a series of tests of varying lengths. Starting with ten seconds, and my longest one was 4 and a half minutes. The noises vary, some are like a washing machine whirring - this was what I was kind of expecting - but most of them are different to that. I was surprised by the electronic musical nature of the noise. It was like a cross between a rhythmic bass line to an eighties song and an annoying person repeatedly pressing the same key on an electronic keyboard - at top volume. There is clicking in there too, but it's very regular sounding, not random noises, so I find myself kind of counting along with it. Counting makes it go faster.

I didn't have contrast this time due to being pregnant, which made the scan much shorter. It made me feel a bit strange the first time but not as bad as the contrast for the CT scan. I wonder if they're the same and that was just in my head. Ha, in my head. Anyway, it isn't particularly pleasant but it isn't that bad and the benefits are obviously huge.

And that's it. Then they come and pull you out, remove earplugs and off you go. I really am not sure what I was making such a fuss about. Next stop - results.

Sleeping. Or, more accurately, not.

Warning: this post is a self indulgent rant. Formulated in my head over night and possibly (definitely) contributing to my inability to sleep.

I've always suffered from bouts of insomnia so this is nothing new. But since going back to work I need much more sleep than I did before surgery in order to function and concentrate properly. The effects of not sleeping are much worse now.

I found a great term in a trashy magazine at the hospital yesterday. It was an article about surviving 50 years of marriage, and mentioned "night rage" (as in, don't have it). I love this, my definition: irrational rage in the middle of the night aimed at any number of inanimate objects and / or unfortunate husband or cat. Something I could really learn from.

Last night was particularly bad and I found myself raging away. It isn't productive as I end up actively searching for things keeping me awake to add to the list. Plus the adrenaline caused by the outrage puts falling asleep into the realms of impossibility.

So my plan is to treat this as I would a work project. By exploring all the things that give me night rage, I can identify the ones I can do something about. Then do it. Then get some sleep.

Ok, let's go.

  1. Lack of curtains. Easily fixed you might think, but requiring decisions. Difficult ones! We have a huge bay window with shutters on the bottom half. The curtain pole we inherited was never fixed on properly when we moved in, and finally gave up the ghost about a month ago, so we took it off completely.

    The question is though, blinds or curtains? Or both? The other question is, curtain pole or rail? And the other one is, fix the curtain pole (or rail) to the wooden frame or to the wall? And how much would it need to stick out in order to allow the curtains to fit over the shutters? And how to measure it properly, given the bends needed for the bay? Also - what colour curtains?

    I am paralysed by indecision. And awake.

    In other news, there's a street light ideally positioned just outside to shine directly in ones face at a certain point in the bed And if you move to avoid it, then it reflects in the wardrobe door - directly into ones face. Also, the sun has a habit of coming up each morning, and since British pretend summer time started recently I think that's probably going to get worse.

  2. The bloody cat. In an attempt to find out if Oliver is allergic to said cat, she is no longer allowed in the bedroom. Plus, sometimes she makes this horrendous smell, which I won't go into. Not impressed by this turn of events, she has taken to scratching the bedroom door repeatedly in the dead of night. She even adds dramatic pause for effect, then starts up again. She has amazing stamina actually.

  3. The radiators. Since the new boiler incident about two months ago, the radiators make a clicking, groaning, straining, hitting-self-with-spanner kind of noise every morning. It's really irritating. I'm always just waiting for the next click.

  4. Being pregnant. Weeing. Or specifically thinking I need to wee when I know that I actually don't need to. Also, not being able to sleep on my front (preferred sleeping position for over 30 years) or back (in case of aorta-squashing). This results in major paranoia about whether I'm harming unborn child in my sleep, by depriving it of blood whilst merrily dreaming away. Ha. And another thing - heartburn. Sigh.

  5. People breathing. And turning over. How dare they? Actually I'm adding this in for effect as Oliver is away this week so he really can't be held to account. I can't hear him breathing from Germany.

  6. The bin men. Rudely awakening me (I know - I've used this already, and it isn't Wednesday). We have single glazed sash windows, which are lovely but not very good at sound proofing. Despite initial concern when we moved in about the level of outside noise, mostly it's fine. If an argument does happen to take place just outside our window, I generally find it quite easy to drop off to sleep again (plus it's quite entertaining).

    The bin men on the other hand, Jeez Louise. Do you have to make such a song and dance about it? Will that bin lorry rev any louder? Can you make more of a crashing sound with each bin, getting closer and closer with each crash and shout... then sloooooowly, further away down the street? Maybe if you dropped the bins from a bit higher up you could get more volume going on the crash, but frankly I doubt it.

    And what - is every day bin day now?

  7. The car alarm. I'm not sure it is a car actually, maybe a building somewhere opposite, but it goes off with alarming (ha ha) frequency. Only at night. See previous post when just out of hospital.

  8. This blog post. Gah. I've been composing this all night in my head, which has inevitably been keeping me awake. It's now almost time to get up. The radiators have stopped clicking, the cat has given up scratching, the husband isn't here, the car alarm isn't screeching and the bin men are long gone. Even the street light has gone out - although it is broad daylight.

    Perhaps my time would be better spent getting a doze in instead of ranting on my iPhone.

Monday, April 08, 2013


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!