Next chapter.

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

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

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

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

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

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

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

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

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

A year off scans, yey!

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

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

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

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

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

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

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

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

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

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

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.

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.

Stranger than fiction.

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

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

Anyway.

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

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

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

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

Hurray! One year!

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

Happy 24th October everyone xxx

About time.

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

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

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

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

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

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

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

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

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

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

This time last year.

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

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

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

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

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

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

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

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

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

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!

Doodle-oo-doo.

Doodle-oo-doo-doooo...

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.

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.

Dramarama.

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

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

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

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

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

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

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

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

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

Hello again. I think I've missed you.

It's been quite a while, and although I've thought about writing it hasn't really been a priority. But the last few weeks I've been thinking more and more and I reckon it's time to have another brain dump.

Things seem different now, there are thoughts and feelings that I would definitely have written about back in the day had they occurred to me, but it doesn't quite seem right now. I have rejoined society and am back at work. In some ways it would make me more comfortable if I could keep everything separate, in neat little silos. I guess that was the whole point though in the first place - to just be open about everything. Old habits die hard.

Anyway, here we are. It has been over five months now since my operation and I am coming up to the next set of scans and consultations. I should really have had them in February but they got pushed back. I think the speed at which I am approaching the MRI appointment has brought on this need to write again, it's always at the back of my mind and there's an uneasy feeling of unfinished business in the air.

Realistically the chances of the scan showing any regrowth is really, very small. It doesn't quite work telling myself that though, and I'm still feeling a bit apprehensive.

Besides this, I'm generally feeling ok. It's hard to believe that everything written here actually happened now. Equally it's hard to believe that I'm alright. I'm more than alright, things are great. Besides the constant tiredness and the short hair, I am pretty much back to how I was.

This is just a little reintroduction to writing again, and I hope to detangle my thoughts over the next few weeks with a few more posts about actual things. It definitely helped writing stuff down last time so I'm going to try that again. Oh - and my super talented uncle sent me some brilliant photos he'd managed to get from my MRI scan and I've put them on the photos page. Check out my eyeballs - I always said they were my best feature.

Three whole months!

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

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

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

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

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





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

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

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

Life goes on.

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

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

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

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

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

None of these things have happened.

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

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

Life goes on.

Two monthiversary.

Two months today. I thought it would be worth writing a little about how things are going, seeing as it's a bit of a milestone.

In some ways it doesn't feel like two months can have possibly gone past. In other ways I am a different person now, it was a lifetime ago. Thinking about the week after surgery makes me shudder. I can now remember things that I must have originally blocked out of my mind, painful and nauseous things. It's not nice to remember, but it's good to compare and see how far I've come.

Christmas is here and along with it plenty of seeing family and friends. It's great that I am not the headline news anymore - we have all moved on. It was a massive shock when it happened, and the legacy is still rumbling in the background for me, but there has been a shift in the last few weeks towards normality. I think not writing Henrietta has helped me move on too.

As I get ready to go back to work, the main thing worrying me (surprise surprise) is my hair. Why won't it grow faster? I had it cut this week, and it actually looks much better than it did, but there are still huge shiny bald areas over the scar. Which is disturbing for anyone taller than me.

The only pain left is scar pulling, but that is getting less frequent. In fact I've started to get some movement back under the skin, thanks to massage. And that is encouraging as I wasn't sure if that would come back at all.

A good thing is that I have had a date through for my next scan, in early February, and I'm really looking forward to it. I want to see the space where the tumour was. Will there be brain? Or a gap? A bit of both? I guess it will be proof to me that it has actually gone...

So that's it. Back to the marathon eating required of Christmas. Have a good one everyone!

Thanks for reading.

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

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

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

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

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

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

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

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

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

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

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

Have a happy Christmas everyone!

Thanks for reading,
Jx

What a year.

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

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

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

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

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

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

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

A little perspective.

It's funny the way the course of life can take such unexpected turns. We're encouraged to plan from an early age - what you want to be "when you grow up" must be one of the most eye-rollingly common questions you get asked as a child. (My three year old niece wants to be a witch - respect).

I once got sent out of class at age 16 for saying I wanted to be a space man. Although I did actually think it would be cool to go to space, I thought I was highlighting the ridiculousness of having to choose so young (and the sexism in the term). I wouldn't have wanted to be a teacher of the teenage me. As it worked out, I never did decide what I wanted to be, it just happened.

Nowadays, with the majority of my days spent in front of a computer, I've got used to having control-zed as an undo mechanism. There's a little voice in my head that says "ah crap, control-zed", whenever anything goes wrong. It's when you try to control-zed yourself out of stepping in a puddle that you have to worry.

But there's nothing like that feeling when you just can't take something back. Seconds after a car crash there's that awkward moment - if only you could turn back time. There, in that second, it feels like a new path has been set before you, that you now have to adjust to. But actually it's just different to the way you imagined your path to be. Life is constant readjustment.

I would have thought that finding out I have a brain tumour would be a massive diversion from my planned path, needing major readjustment. But it didn't seem like it at the time. Maybe it was so huge that I was in shock and couldn't process it, but I don't think so. We were given the news so incrementally that there was never a shock reveal. I even felt like I'd known all along, which of course I hadn't. But there was something oddly familiar about the revelation.

And it was temporary. I knew I would have the surgery to remove the tumour and then it would be gone. Back to real life. When someone close to you dies, or you lose a limb, you have to live every day with a reminder of that. I am lucky that I will recover from this so completely (fingers crossed) that people would never know unless I told them. Or they read Henrietta of course hmm.

[Obviously there is a chance I'll be doing this all again in a few years time, but I'll deal with that when we come to it.]

My readjustment time came after surgery, when I'd had time to work out what the effects would be. There are things I can't argue with, like having to surrender my driving license. And there are subjective things, changes in the way that I think about, and prioritise, things now. I'm subtly different from how I was, and my path is different now to how I'd planned it just two months ago.

Horrible things happen, and then you have to get used to them and deal with it. They tend to put things in perspective. The poor nurse that died today after receiving a prank call about Kate Middleton, there's your classic turn-back-time wish. The sequence of events that lead up to it, and the massive readjustment for so many people - that's given me some perspective alright. So sad.

The holiday dance.

It's lucky my arms didn't suffer muscle loss, as they are needed this morning for the holiday dance. We're going on holiday - today! We're going on ho-olida-ay, we're going on ho-olida-ay!

There. Just for old times sake.




P.S. If anyone has any recommendations for where to eat, drink and do (gentle) things in Brighton please can you send them to me (jencoh@gmail.com) or comment below? Thanks v much! Ho-olida-ay - WOO!