It's only a four year all clear post.

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


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


Happy brain day to me.

Next chapter.

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

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

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

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

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

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

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

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

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

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.

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.

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.

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!

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!

The outside world.

I've been outside today. Beyond Camberwell. I accompanied Oliver on his travels, which entailed sitting in a massivo van while he drove around London picking things up and dropping things off in advance of a trade show this weekend.

I have stayed awake all day, which is a first, and although I am totally exhausted now - I had a brilliant time. It was frustrating to not be able to carry things and help more (I struggled even getting into the van - it was really high and my leg muscles are still not really up to much), and extremely frustrating to not be able to drive. I already miss driving, how am I going to cope if they keep my licence for a year?

But it was really good fun and quite refreshing to be interacting with the outside world again. We randomly bumped into a friend, and saw several other friends by design. I was worried about the big reveal, and how I would cope with the inevitable interest. Aside from being called a gypsy it was better than I thought.

One thing I have to watch though - when people ask me how I am, I tend to get defensive. And then it's a bit awkward. Or I am a bit awkward. I must remember that it might be just a figure of speech, it's just what people say when they greet each other.

This is the first step though. Going further afield and staying up all day and meeting people again. I'd become a bit of a hermit, I think.

Bedtime now though.

Some exciting news.

I'm very excited to report that an extract of Henrietta is going to be published in the Guardian's G2 section! Am slightly (very) nervous about it - it's weird to imagine people reading my ramblings, in print, over their rice krispies. But also very excited, I love the Guardian.

It was strange, how it happened. We were in the car leaving Olly's office and I got an email from Twitter (which is annoying actually, Twitter has recently started emailing me all the time) to tell me I had a new follower. I checked her out in case she was a spambot but no, it was a genuine person who worked at the Guardian. That's all the information it had.

I turned to Olly and said "Imagine! She could be a commissioning editor and they'll publish Henrietta and we'll be famous and then hollywood will make us into a film and then we'll be rich and never have to work again!" after which we spent the ten minutes driving home debating who would play who (Anna Friel and Jason Statham. Of course).

So half an hour later, over lunch, when I got an email from the G2 commissioning editor wanting to publish an extract of Henrietta, it was all a bit weird.

They're sending a photographer round next week. Gah! What will I wear on my head? And what will I wear?

Just waiting for the call from hollywood. Any day now.

Post meh, already.

It's mad how whenever I'm feeling a bit down my instinct is to not talk about it. But when I do, it makes me feel better immediately. It's not been five minutes since I posted 'Meh.' and now I feel loads better.

Nothing else has happened, how does that work?

A sudden motivation.

Officially, baby sitting ended last week when the post-surgery risk of a seizure reduced. But Oliver had terribly bad man flu so worked from home most days, and mum was on reading week so was around a lot too. It has been great to have people to talk to during the day, but I am looking forward to spending some time on my own. I can't remember the last time I was on my own (except the night before surgery).

It's Monday and I have loads to do. I discovered two amazing websites this weekend through the Guardian, both about education. On Saturday I found the Guardian Chinese Challenge on Memrise and over the course of the morning - in three minute bursts (perfect for my concentration span) - I learnt about twenty symbols. You can learn loads of things on Memrise, I plan to learn some French vocabulary and all the flags / capitals of the world. Something I can show off with down't pub.

Then on Sunday I read about Udacity, which really intrigued me. I haven't had a good enough look yet but I believe I can learn to programme in several languages, and something about artificial intelligence. Awesome! It may require more concentration than I currently have, but I plan to research it today.

So I have lots of learning to do. If I'm going to be off work for a while this will make sure that I am still using my brain. My newly uncramped brain.

Also, drum practise - I need to do some. And get some passport photos for my freedom pass application. It's great that if you can't have a driving licence for medical reasons (as opposed to being banned for drink driving) you can get a freedom pass which gives you free bus travel after rush hour. I'm not looking forward to the passport photos though, I hate those booths.

Right then, busy day ahead, and my list is waiting. Best get cracking.

A goal in mind.

They told me in hospital that it's good to have goals to work towards, as a form of motivation to recovery. I kind of went "yeh yeh yeh, let me go home" and brushed them aside as I felt I had no shortage of motivation.

I think they meant physical achievement goals, like getting back to jogging, and playing the drums - but my favourite goals are about experiences. Like the fireworks night at Brockwell Park, originally my surgery date was the 2nd November - the same day as the firework display. Obviously there was no chance of me making it then, but even when the date was moved forward, it seemed unlikely. There was half a chance I would still be in hospital, and I wasn't sure what I would be able to cope with noise-wise... fireworks are loud.

But I made it! I was really proud of myself. I was determined to at least try, but walking to the bus stop totally wiped me out so I started to think perhaps I wouldn't last. When some scally started playing music out loud on the bus, we had to get off. Things weren't looking good.

In the end it was the thought of donuts that kept me going. We had a really good time and once we were there I was fine. It was good to be out doing things again, together, albeit in a slightly different (and more subdued) way.

I paid for it the next day though, I couldn't get out of bed. I was exhausted, beyond exhausted. I have never run a marathon but I imagine that's what it feels like the day after. I was bruised! But it was worth it - for the sense of achievement as well as the brilliant time we had.

So, it's all about balance once again - I should still do the things I really want to do, but be aware that I need to schedule in recovery time. And I may feel a bit rubbish afterwards.

Which leads me to tonight. Am so excited. Not least because I thought this would be something I was sure to miss, but given I came out so early it's back on... yey!

Jake, my brother-in-law, is playing at Shepherd's Bush Empire. It would have killed me to miss it, I pride myself on being a true fan and have seen Jake play all over - but this is massive, Shepherd's Bush Empire!

It's a brilliant goal for me to have. Firstly, obviously, I want to be there for the experience - it's something I really want to do. And secondly it's a goal that will make me feel like I'm part of the real world again, doing things that normal people do. Even being out and about will contribute to that. And I have the feeling that if I don't make it all the way through, it's the trying that counts. Being motivated to give it a go in the first place.

We're planning a military style operation to get there early and scope out where to sit. I am worried about noise mainly - crowd noise and background music in the run up to the acts. Worst case scenario I show the bouncers my frankenscar and ask if they can let us back in at the last minute. Gah am so excited.

Watch this space.

Actually watch this instead, hope he plays it tonight it's my favourite (after Freddie of course).

The after effects.

I talked a lot before surgery about my fear of pain, and everyone kept telling me that it wouldn't hurt so much but I didn't dare believe them. In my book it's better to manage my expectations down so everything's a bonus.

But it really hasn't been that bad. During recovery and the first night the nurses carry out obs every two hours, and part of this is asking for pain levels out of 10. From the beginning I found it hard to gauge the pain in my head - it was strange and transient. Was it surface pain from the wound, or deeper pain from the depths of my brain...? (I know that there aren't any pain receptors inside the skull so this isn't possible but it felt like it sometimes).

I was wary of pain, so I took all the pain relief on offer, and that worked.

But I was aware I was masking the problem. I wouldn't get a handle on how painful it was until I turned down the painkillers. That was a scary thought. Turns out it's absolutely fine, since I've been home I've taken two paracetamol by way of painkillers and that didn't even do anything. I have weird pain in my scalp as you'd expect from any cut, but it isn't that bad and comes and goes. It's actually starting to itch now more than anything. It's comforting to know that I have a big bag of codeine at the ready should I need it.

The more interesting after effects are the sensation of movement and imbalance inside my head. It's hard to describe but everything feels very lopsided. It isn't constant and every now and then something shifts in a very disconcerting way and I have to wait for my head to reacclimatise. Sometimes is doesn't.

And laughing really is weird. It's nice to notice how often you really laugh, although frustrating when you can't let yourself. I feel lucky to be laughing so much at a time like this! When I laugh my scalp moves in such a way that I think it's going to get stuck in the wrong position. I guess it's the scar pulling, and will get better soon. Stitches are due out on Wednesday so hopefully it will be healed enough by then.

Today my head has in general felt a bit more stable, and centrally balanced. I suppose it's got a big change to get used to  - there is a space in my head where there wasn't one before and a loose bit of skull that needs to knit back together on one side, so it's no wonder that it feels a bit lopsided. It's amazing I am walking around at all, let alone feeling as strong as I do.

I'm still waiting for the new found amazing skill, that I was convinced I would acquire through head trauma, to show itself. It isn't a language, I've checked. It could be eating judging by the amount I've put away in the last two days, although strictly speaking that wouldn't be new found. Hmm wonder what it could be...

Booooooom!

Because I don't really know what the effects of the surgery will be, it's hard to plan anything for after. What is worrying me at the moment is how I will react to working through the side effects - as from past experience I think I could go either way, rather stubbornly. Sometimes, if I want something then I'll do it as best and as hard as I can. But equally, sometimes I have been known to just throw the towel in and give up without really fighting at all.

Especially in a competition situation. I'm a bit worried about the possibility that the exhaustion and shock from surgery could well contribute to me just not being motivated or bothered enough to work hard and focus on recovering. On returning to physical strength, whatever that may be, as well as mental strength and focus enough, to function in a work situation.

Oliver has had the BEST plan, and I'm really excited about it.

We have ordered an electronic drum kit. I LOVE drums. Whenever we go and see a band, it is usually the drummer that I am watching, it fascinates me. Forever it's a skill that I wish I had. In fact when I met Olly and he told me he was a drummer I should have told him then I was going to marry him - he had no chance.

It just seems perfect for so many reasons. It will be a brand new skill, something that I can work on on my own at home during the day, but Olly can teach me when he's around in the evenings. It will keep me occupied, and I'll be able to see my progress.

But better - it is exercise, I will be forced to use my arms and legs - both of them. Even if I don't have full strength on the right, I really think it will be something that will encourage me to try. And to improve.

Because it's electronic it shouldn't be too loud, here's hoping, so my head will be able to cope with the noise as well as the upstairs neighbours... I feel some consolation wine coming on there. But realistically I can play during the day when there's only me there anyway.

I'm so excited. It's arriving tomorrow. JAM TIME.


(Any drummers out there - please send tips for complete beginners!)

What a thing to happen.

It's funny but, despite everything, I really am quite glad that this is happening.

Obviously there are some downsides but I wanted to capture this feeling of positivity that has come out of the experience overall. I've touched on it before, and it is definitely still there throughout the down days - but the underlying feeling for this entire situation really is a positive one. Odd.

Several reasons:

1) Timing.
There would never be a brilliant time for this to happen, but if I had to choose when would be best - then it would be now. Quite a few actually spooky things came together to make it all very convenient. Mum starting her MSc and being in London. It happened on the exact same day she started her course and was staying with us anyway. Last month it could have been Somaliland or Timbuktu.

And we're only six weeks moved into our brand new house, which has provision for me to sleep downstairs if I need to, post surgery. And can accommodate mum in the spare room. What if it had happened before? I don't think we'd have still got the mortgage to be honest.

Also, I'm still relatively new in my job but I almost accepted a contract offer instead. I chose lower paid permanent work with a company I believe in for a team that I knew would work well together. What a decision was that. Work have been immense in this entire situation and I have totally lucked out.

And the other thing is that Beka is on maternity so I get to see loads of them and the kids.

2) Time out.
This is forcing me to take a little time out of life, and try a whole new pace. It wasn't easy at first and didn't come naturally - I really missed work and the structure and motivation it gives me. But I'm enjoying it more and finding new ways to motivate myself now that I'm getting a bit stronger. It is a lull right now as I count down to surgery and finding out what side effects I will need to contend with - and I fully expect post surgery to be focussed on returning to work but I know it will take a while.

In the meantime, it has been a very positive experience trying something different in terms of structure and motivation. When else do you get the chance to do that?

3) Contemplation.
Time to think. I am being forced to think about what I really think. And I'm really enjoying it. I just spend time thinking, and I don't feel guilty about it being a waste of otherwise useful time. I don't sleep much and I don't get out much, and I've been just thinking. I love thinking! And then writing down my thoughts. And then moving them around a bit until they make sense. I think I will miss this when normal life resumes, and I don't have time to sit around in my pants all day thinking of things to think about. (I don't sit around in my pants, I have pyjamas on at all times).

4) And where am I?
This one is the real crux but I've banged on about it for ages already. I just can't believe how I have managed to end up here, with everything anyone could want. I don't need anything else, I have just really landed on my feet and although I knew I was happily sorted this situation has really hammered it home. I'm so lucky. If everything went totally tits up now, I would be happy to have reached this point. I think that it totally amazing and you all know who you are that got me here.

5) Created a milestone.
This was a complete surprise, and a real bonus. It happened almost immediately. I have been feeling kind of old recently, and a bit behind in my life goals. A bit pressured and kind of needing to get on with things. I'm 33, and I remember so vividly my mum turning 33 - I made her a birthday card. She was at university studying medicine and I was eight years old. She also had my sister, 10. That is just incredible what she had achieved by my age and this weighed on me as I reached my 33rd birthday.

On top of this I have really started to notice that I need to work harder to remember things, and stay focussed and hearing and general little niggles reminding of the march of time. I was starting to feel old.

But not any more - how weird is that? I'm only 33! In five or ten years time we can look back on this and say wow remember when you had a brain tumour - you were so young! You were only 33! This has created a big milestone in my life, and when you think of it in the grand scale of my (hopefully much longer) life, 33 is nothing. It's the beginning. This will be a huge milestone and something that we will always remember. In a good way. So just to clear things up, I'm not old - right?

6) It's so interesting.
Vain! But really, this makes me more interesting - especially to myself. What with the self contemplation and the whole process, it's just really interesting. I'm watching myself deal with this and I can't wait to read all this back when I'm done and think wow did I really think that - I'm mental. But I'll have a record of how interesting it is. I hope its interesting!


After surgery I will know what the full impact of this will be on my life, and that is obviously the big worry right now - what will I physically have to cope with and work through? But it's good to see that at this point I feel a positive impact of a brain tumour. I had always been pretty sure that I'm a massive pessimist, but worryingly / surprisingly / interestingly I'm not sure I am anymore. That's weird.

This time next week I'll be waking up about now, with a brand new space in my brain for more crazy thoughts. Get ready Uma, coming to get you.

An unexpected pleasure.

I've been really surprised how much I've enjoyed writing over the last two weeks. At first, it really was just a brain dump to get the thoughts out of my head in the hope I could let them go. But it has become something that I really look forward to, and spend a lot of time thinking about.

There is a bigger piece to this brewing about how it feels being so open, which I am not at all used to, and also how it is affecting the people closest to me. It's on the way, but in the meantime this is really just a recognition that I enjoy the process of the writing. Totally unexpectedly.

I always had a bit of a romantic view of writing and it's something that I've really wanted to be good at - but was very paranoid about. I never really had anything to write about before and I really like having the time to think about it now. It is keeping me busy, and is forcing me to think about what I want to say. It also helps me feel much more in control and self aware.

But I wasn't expecting to enjoy it so much!

It is really wonderful to hear that people are reading it too. I love watching the page stats go up and wondering who just read that? What did you read?

And up again.

I've had a really nice day today. I wanted to log it as I feel like I've been focussing a bit on the negative recently and this shows that really it is just up and down. That's just how it goes.

It was a beautiful sunny day and I took myself off for a walk. I had a lunchtime visitor, I dried some washing on the line and I watched a film. I even had an afternoon snooze on the sofa. When mum and Olly came home we had a lovely evening together and now I'm really tired and going to bed, so hopefully I will sleep.

Again, I feel really lucky. We have been making exciting plans involving drumming, which I'm sure you will hear about, and I have just the most amazingly understanding friends. I've got a really great load of things happening in the week ahead of surgery and I'm going to make the most of it. What's the worst that can happen eh?

Hurray xx