Wednesday, October 01, 2014

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.




Sunday, June 29, 2014

Hi ho, hi ho. Sob.

I'm going back to work tomorrow, after almost a year on maternity leave. Before that I was pregnant whilst recovering from brain surgery. And before that I was off sick for multiple months. It's been an odd few years and work has not really been a priority.

I've been in denial for ages about it. It's not that I don't want to work it's just that I don't want to not be with Alfred. I will miss him, and I will miss out on him. I won't be the one that sees him develop and knows what he likes. It's selfish, but I like being that person. The one who knows him best.

I know he will be fine. Of course he will be fine. But I worry that he will think I have abandoned him, and I worry that he won't notice I'm not around any more. And I worry that nobody will care as much as me and I worry that I won't be in control anymore. And mostly I worry that I will hardly ever see him.

But my bag is packed,  my office appropriate clothes are washed and my lunch is ready in the fridge. There's no denying it now.

I don't want to go to bed as that means morning will come quicker.




Tuesday, June 24, 2014

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? 








Tuesday, April 29, 2014

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.




Thursday, April 10, 2014

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.






Thursday, March 13, 2014

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.



Glam.

This is a ridiculous post. You'd almost think I was a proper girl, if you hadn't met me. Anyway, I am super chuffed that I can now french plait the front of my hair. It is long enough to actually french plait.

A hair milestone! It certainly makes it clear that I am not a 12 year old boy, although it saddens me that 12 year old boys don't generally have the pleasure of a french plait in their hair. Poor Alfred doesn't know what's ahead of him, I originally wanted to be a hairdresser (that was before I discovered space men) and always planned on using my children to fulfil that missed dream :)

Grow hair, grow! I would be grateful if everyone could do an encouraging hair growing dance for my head. Thanks.


Such a ridiculous post, yesterday tea, today hair. Possibly trying to put off thinking about the post I should really write...




Wednesday, March 12, 2014

A nice cup o'tea.

Well. Something enlightening has happened. I am enlightened. 

Despite working in dubious bistros, restaurants, cafés and pizza huts for many years in a previous life, serving all variations of hot drinks to the Great British public, I never fully thought about the meaning of "decaf". I know, I'm an idiot. 

Decaf tea! I love tea! At age four, my grandad gave me some heavily sweetened tea, much to my mum's disgust, and I've loved it ever since. 

Trouble is, I've always associated it with migraines. In the desperate search for a trigger it seemed obvious, the only caffeine I consume. There was never any evidence, but a growing 'just in case' mentality which left me scared stupid to even LOOK at a cup of tea. 

Until now WOOHOO, decaf tea! It tastes... just like tea. My sugar intake is just about to go through the roof, I'll just put the kettle on. 






Thursday, January 02, 2014

Migraine terrors.

Aaaand back to reality. As predicted, today the migraine has mostly gone, and so has my imaginary tumour. Two days of a migrainous gunge-filled head has left me emotionally as well as physically reeling. The lingering sickness and fogginess, and the impulse to move my head the absolute minimum is so familiar to me. It's been a while, but my body remembers it well. The emotional repercussions are something else.

It has been one year, 13 weeks and a day since I had this kind of migraine. I can date it so well as that was the day they found my tumour. That day marked a big pin in my lifeline, a clean split creating a before and an after. And it turns out I had thought I could count migraines in the 'before' part.

Although I have had migraines since surgery, they have been totally manageable. I took two paracetamol and went to bed for a couple of hours. Felt rubbish for the rest of the day but was able to function as normal within 24 hours. I always knew this could have been pregnancy hormones, but there was just a tiny chance that surgery had improved them, for good.

I hadn't put much conscious thought into it but after yesterday I realise that, subconsciously, I believed I'd been cured. I haven't had a migraine for nearly ten months. Unheard of. And that was well easy to deal with. It has been a real blow coming to the realisation that I haven't been cured.

Before all this kicked off I lived in permanent fear of migraines. Not least because I can't work through them, and I feel like such a fraud taking time off work with no visible symptoms. Does anyone believe me? Does anyone know what this is like? It's isolating in the way that I can't even describe how wrong it feels. I used to get them regularly, about every two months. They would last three days and there was nothing I could do about it. No way of working and no way of escaping the horror.

I was walking paranoia. I avoided caffeine like the plague, ran away from camera flashes, didn't drive at night because of car headlights, and if out at night at all, would stare at my own toes just in case. Waiting for trains was a nightmare, they always have their lights on and catch one by accident entering a station? Blind panic for half an hour. I lived in fear. Don't even say the word in case it brings one on. Don't even!

But now they're back.

I'd been enjoying my migraine-free life, I've been drinking tea, not getting enough sleep or drinking enough water. I've been downright frivolous with camera flashes. It has been great fun, not living under the paranoia of a looming migraine. Now that I know I'm not cured, I don't see how I can avoid that paranoia again. It's been a depressing realisation to come to.

Work was one thing, I would have to call in sick no matter how much I didn't want to. There was no way I could work. The terrifying thing is, you can't call in sick to a five month old baby.




Wednesday, January 01, 2014

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








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...

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.




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

Sleepsleepsleepsleepsleep.

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.