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!

I spy a grey hair.

I wish I just spied a grey hair, but I spy many grey hairs. The science part of my brain doesn't think this can be true, but it does appear that my grey hairs are growing faster than the rest of them. A third faster.  It's incredible.

This isn't what I meant when I asked my hair politely to grow faster. I should have stipulated - only the ones with melanin still in them.

T'uh.

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.

Under pressure.

Having always been a bit of a planner, it's annoying that there isn't some stake in the ground - a point in time by which I know I'll be fully recovered. How can I plan when I don't know how long it will take?

And how do I know if recovery is taking too long? I have nothing to compare it to, so feel this pressure to be recovered already. And be heading back to work.

I'm not very consistent in my own understanding of my recovery. Some days I'll convince myself I am totally ready to go back to work. Some days I can't bring myself to get out of bed. There doesn't seem to be any pattern, and there isn't anything visible to judge it on. I worry that people think I'm putting it on. Making it up.

I know they don't think that really, but I feel like I have to go over the top to explain myself.

There is progress, it's just not linear, and not visible. I feel a pressure for me to be better, be recovered more - and I put that pressure on myself. I feel guilty if I laze around not doing anything, but I feel guilty if I'm out doing something, because maybe that means I should be back at work.

I just can't win with myself.

Bearing all.

We're on holiday at the moment so I took the opportunity one day this week to be bare-headed in public. Just to see what it was like. It's seemed easier here, where I was unlikely to bump into anyone I know.

It went like this: we stopped for lunch at a little chinese restaurant in the centre of Brighton; we were pretty chuffed to be seated at the best table - a booth; I tentatively removed my hat and we ordered. Then we noticed the mirror.

I was sitting directly underneath a slanted mirror, on the underside of a staircase, that was effectively reflecting an image of my scar to the entire dining room. That's enough to put anyone off their food.

Typical.

Initially I was hyper aware of everyone's expressions as they looked at me, trying to second guess what they were thinking. But I did relax after a while. Later, when we were in a pub with yoofs all around, I did get a bit more self conscious but then the alcohol kicked in.

It's only going to get easier.

Positively relieved.

Well. I've been dreading today, publication day, for quite a while. Quite frankly, it's a relief I don't have to worry about it anymore - I'll be tomorrow's fish and chip paper!

I was worried about two things mostly:

1. The photo. Of course. I've been having odd dreams about what the photo would look like. In it's natural state, my face is quite grumpy (and has big cheeks), so I have to make an effort to smile. But it didn't seem quite appropriate to be grinning like an idiot... so I think I grimaced a lot for the poor photographer. Also I could see my reflection in the lens (it was a huge terrifying lens) and it made me cringe. Would I be cringing out of the pages of G2?


2. Up until now there has been at most, I reckon, two degrees of separation between me and readers of Henrietta. If you know me (or my family) it's harder to be rude and, to date, everyone has been very lovely. Suddenly, people who have no idea who I am could read this. Let's be honest - will read this. What on earth will they think? Guardian readers are hardly known for their compassion below the line...

Disclosure: I used to work at the Guardian some years ago. (It is still a favourite pastime of mine to read commenters ripping into each other and journalists and the Guardian itself).

In the end though I decided not to care (my dodgy-photo dreams aside). I would just let it happen, and not be hurt by any nasty comments, or ridicule myself about the photo. I no longer care what people think. Repeat: I no longer care what people think...

Ironically the one negative comment (so far) was, in part, about me being positive. At first I wasn't too bothered but when people started to endorse it (until it was inexplicably removed - I'm not sure why as it wasn't breaking any rules), I forced myself to really think about the authenticity of my positivity. What a mouthful.

But no, I was right the first time. I still feel incredibly lucky. It's 'unlucky', I guess, to have a tumour at all, but I really think I am in a better place because of it. That's not to say I'm happy that it happened and I certainly wouldn't want it again, but I now know where the best things lie in my life. I'm really not sure I would have discovered that without a proper wake up call.

One thing I didn't expect from this publicity lark, was the sheer number of people that would get in touch. I've felt a bit of a fraud at various points throughout this experience, and here is another reminder of that. I've had it easy (relatively) with my tumour as well as my recovery. There are so many people out there who have it worse, and they are contacting me to wish me well. Wow. 

I feel like we should all have a brain tumour party together and get drunk.

Also, I just read this tumour blog by finneyonthewing from start to finish - it's hilarious. Really made my day I should have read it a long time ago. Go on, read it.

Headscarf tips.

There's no getting away from it, wearing a headscarf is a right faff. I thought I'd share some of my tips, seeing as I've accumulated a few that makes it less frustrating. Marginally.

1. Always wear a cap underneath. It feels more secure and makes it easier to put the scarf on a flat surface (as opposed to a bumpy scar or velcro type hair), and also helps bulk out the volume on your head (this is useful in reducing the cheeks to head ratio, if you have big cheeks). I like hijab bonnets, they come in all manner of colours and styles and are cheap as chips. The ones I have are really comfortable and easy to put on. You can also use a small silk scarf though too.
2. Don't struggle with tying the scarf in a knot, it always comes loose and then the whole thing swings around and paranoia kicks in. Use a hairbobble. Treat the scarf like your hair, it's really easy and much quicker and looks the same. But it's much more secure. Here's a video explaining it.
3. Tie the scarf slightly to the side, that way you can still move your head up and down. If it's at the back of your neck the knot gets wedged when you try to look up. Discovered this talking to a tall person, very stressful indeed.
4. If your scarf is massive, fold it up before tying. In fact fold it anyway, until you just have enough to go over your head. I've found it's much easier if you don't have scores of material to deal with at the neck end, and - added bonus - by folding it up you get more volume around the head. It's all about the volume.
5. Layering works, use different coloured thin scarfs to tie around your hairline, over a plain headscarf. Or wear a contrasting colour cap under your scarf peeking through. Jeez. What have I become.
6. You can use all sorts of things as a scarf (here's a video using a t-shirt), go experiment.

I've pretty much had it with headscarves to be honest. I can't wait to just be able to leave the house without thinking about it. So if anyone out there is struggling too, I hope this helps just a bit.

Feeling the effects.

Yesterday I read Juliet Jacques' last column for the Guardian (it was a great series and I will miss it, good luck Juliet!), and something she wrote immediately jumped out at me: "I no longer feel constantly aware that I have recently had a major operation".

I read her column about surgery just as I was coming out of my own operation. I remember identifying with a lot of what she said at that point, about energy, and being totally dependent on her parents again. So I've been eagerly awaiting this next column, it's sad that it's the last one but great too as it means 'business as usual' at last for Juliet.

I realised that I am still constantly aware I've recently had surgery. It's in the little things. I'm hypersensitive of anything that could touch my head. And bending down is still quite disturbing. Physically as well, although that is definitely improving, my legs ache all the time. When I get up from sitting down I feel like I'm 80 (or what I imagine it feels like to be 80).

And there's the constant reminder in the mirror too.

With the clicking in my head, I didn't notice when it stopped - I just realised it had at a later point. I wonder if that will be the same with this. I'll just realise one day that I am back to normal.

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!

Noise.

Since surgery I've been a bit disfunctional around noise. It's like my brain goes into paralysis and refuses to function until the noise stops. Rickety trolleys and car alarms are good examples.

It's got loads better already though. When I first came out of hospital I was really bad, couldn't cope with any type of continuous sound. It's great now I can listen to music and I'm ok playing the drums. When I am creating the noise, or it's familiar to me (hello Phil Collins), then I'm alright with it.

The problem is still there with noise I'm not in control of. Screaming isn't good. And anyone who isn't me playing the drums. Also any music that I don't know well - it's very strange, my brain can only cope with volume if it knows what's coming next. If it can sing along to it.

I have seen a marked improvement already though so I'm not worried. I'm sure it will be better soon. In the meantime, if you could keep your voices down... :)

Feeling unwanted.

Hmmm. Just realised I didn't hear back from the King's College Hospital Foundation Trust, where I applied to be a volunteer. It's been over three weeks - maybe I messed up the application. Or maybe they don't want me. Sniff.

Will call them today. Or tomorrow. Soon.

Reflection reflections.

I've been really self conscious about having no hair, as is probably obvious from this blog. But yesterday I started to feel better about it.

It seemed like such a violation to go from long hair to literally none, so I cut it short first. That style felt very alien, and not like me at all. But it was a strange time as I knew I had about a week before it was all going anyway. And I had bigger things to worry about...

Then when the bandages came off after surgery I was so glad it was over that I really didn't mind about the lack of hair. It looked ok at that stage too, and the plasters were still on - hiding the scar.

Recently I've been struggling more. Olly shaves his head every few weeks, and has done for as long as I've known him. Sometimes I do it for him. He takes for granted the fact that his hair grows normally. He has a normal hairline, his hair grows evenly over his head with no thin or thick patches, and nowhere can it be seen grown horizontally along his head clumping in an unnerving manner. Also, he doesn't have bald bits around a crusty red bumpy scar.

Lucky Olly.

I've struggled with the dilemma of what to do when someone knocks on the door. It's not a pretty sight, and really quite scary I imagine. When I'm in the house I generally walk around with the scar out, so the air can get to it. When someone arrives, the choices are to manically pull on a headscarf (which isn't an easy or quick job) whilst shouting at visitor to wait... not ideal, or just brave it naked-headed.

After an episode with the man from British Gas, who couldn't stop staring at the scar in the manner of teenage boy (or pervy grown man) who talks to your chest instead of your face, I try to make sure I have a scarf by the door. Sometimes though, I just can't be arsed or there isn't enough time, or I can't find a scarf. Nobody has actually said anything or seemed uncomfortable. Except me, I am horribly self conscious.

It's quite depressing having to just accept that you look strange - to yourself. I don't look like me, and that is a really weird and horrible feeling. And if I think that what must everyone else think?

Yesterday, for the first time, I caught sight of myself in the mirror and didn't recoil in shock. I've become quite good at just blocking that feeling out, "who the fuck is that in the mirror...? oh god, it's me". I just push it aside as there isn't anything I can do about it. For the first time though that didn't happen, and again this morning after brushing my teeth.

I've thought about it and it could be for any of the following reasons:

1. I've just got used to it, so it's no longer a shock;
2. My hair has grown back long enough (in some places) to balance out the massive cheeks. I've been used to seeing my head with a certain volume around it in the form of hair (oh how many hours I used to spend working on that volume), and without it the ratio is off. My cheeks are way too big in comparison;
3. My cheeks have shrunk. Mum thinks that the steroids made me puffy (not moon-faced, shudder) and that effect may have finally gone.

Anyway, something has changed and even if it's only my perception then it's a good thing.

What motivation?

It doesn't seem long since I was writing about how motivated I am. Drumming, exercising, learning programming languages... If I could be bothered I'd check exactly how long ago it was. But I can't.

I don't seem to be able to be bothered to do anything much anymore. It's like me and Neville are having a competition to see who can sleep the most (she can). I end each day with the best of intentions for the following day, but when it comes around I just can't drag myself out of bed.

Today it's grey and miserable and rainy and cold. Our bathroom is so minging that I've been avoiding the shower (handy excuse) so I'm still in my pyjamas - which makes it impossible to go outside. See my logic? Might as well go back to bed.

I'm not down or depressed or anything, just prefer to be in bed than anywhere else.

The results.

I didn't know for a while what I wanted to say about the biopsy results. I didn't know if I wanted to make it public. I don't want to be defined by this, and I don't want it to affect my career and I don't want any sympathy and constant questions about it.

But I'm getting that anyway so maybe this will help.

I hadn't put much thought into the results before surgery, looking back I don't think I had the capacity then to contemplate the options. I was too busy thinking about the possible side effects and risks of the surgery itself, to even think about the biopsy tests on the tumour.

The type of tumour I had was a meningioma. Over 90% of meningiomas are grade 1, benign. We were told the pattern of mine (visible from the MRI scan) suggested it had grown very slowly over a number of years and was therefore most likely to be a grade 1. After that, I didn't really think about it.

The results came back very quickly, within two days of the operation. The news that my meningioma was indeed grade 1, and benign, was very welcome. But. It was pretty much on the border of being a grade 2, atypical, which means that although still benign, it is "likely" to grow back. They were clear that if that happened, the medically preferred treatment would be surgery. Again.

Fresh out of theatre with my head still in bandages, I struggled to see how this was good news. Naively I had assumed that this was a one off thing, get through this and back to normal life as soon as possible. It was a bit of a bombshell.

Normally, people are old when they get meningiomas. Being early (mid) thirties, there is plenty of chance for it to grow back. If it grows back every 10 years, that is potentially a lot more times I might need surgery.

I really don't want to go through the surgery again.

When I was first out of hospital I mentally parked it, I just couldn't think about it. I was so glad the surgery was over, to still have use of all my limbs and to be back home - that's what I focussed on. I was devastated at the thought of having to go through this again and couldn't process it. I just wanted a bit of time not thinking about it.

One month on, I am in a (slightly) more emotionally stable place and able to be more reasoned. Firstly, how likely is likely? Nobody can answer that. We can look at previous cases but nobody knows what will happen in my individual case.

The fact is, I will be having loads of MRI scans for the rest of my life so any regrowth will be picked up early. At which point I can worry about the implications. Right now, it seems a waste of energy and time thinking about what might happen.

I don't want to plan my life around when I might have to have the surgery again, and I can't let it restrict my decisions and take up my thoughts with worry. I will try and put it to one side, in between scans. Mostly though, I don't want it to be what people think about when they see me - is your tumour back?

What I'm really hoping for is a huge advance in technology, that magically removes tumours from inside a skull, without the need to open it. Ten years is a long time, surely this will be invented soon...

And another thing...

Forgot to mention this in yesterday's post.

The scar is three sides of a rectangle (two short sides and once long side), which they opened like a flap to access my skull - sorry if you're squeamish. It's really odd how the middle of the rectangle has gone numb. I can feel it a bit, but only just - like it's through several layers of thick material.

What makes this interesting is when my head is itchy. I can't feel when I scratch it, which is really frustrating as the itch never goes away. It's a really odd feeling.

Just thought I'd mention it.

Scar musings.

This week I noticed something weird about the scar. I guess it isn't really that weird but I just hadn't figured it out before.

Up until now, the scar itself hasn't really given me much pain. [Side note: the most painful thing throughout the whole experience, apart from the initial migraines, was the cannula in my wrist when I woke up from the anaesthetic. The massive needle was visible under my skin for over an inch and it wrecked! It still hurts now when I wear a watch.]

I was lucky - with the tumour being right at the top of my head I've had it easier than some. Not least because it was easy for the surgeons to get to, and the scar will be well hidden when my hair grows back. But also day to day it has been easy to not disturb the scar - I can lie down without squashing it, so can sleep without any pain.

I heard somewhere that some nerves are severed during surgery, and with no pain receptors inside the skull, its normal to not have much pain with head surgery (relatively).

For the first week the scar was covered up, and I didn't touch the plasters at all as I was petrified about infection. The woman opposite me in hospital was five years and seven operations into rebuilding her skull. Her tumour was removed without complication, but her scar got infected during recovery and I really do not want to go through the ensuing hell that she explained to me in minute detail. So I was doing everything I could to not touch the plasters or the scar. With anything.

Contrary to what I was expecting, having the staples removed didn't really hurt either, weirdly. But the process left the scar exposed, and I found myself absentmindedly itching it now and again. That hurt - I never did it for long.

And then the itching kicked in for real. It lasted about three or four days and was total torture. But it still wasn't painful exactly.

As the weeks have gone on, the healing has improved the look of the scar. It's no longer encrusted with blood, can't really call it a frankenscar anymore. In some areas it has completely healed over already, but in others the skin doesn't seem to quite line up and it's really bumpy. I'm hoping that will improve over time as it looks and feels weird. And brushing will probably hurt (when I have enough hair back).

So overall the scar really hasn't been that painful, until this week. On Tuesday I spent the day driving around in a van (obviously I wasn't doing the driving), and noticed it hurt to rest my head back on the headrest. On closer investigation I realised that the skin on my scalp doesn't move under the scar. Along the length of the scar it feels solidly attached to my skull underneath - there is no give. How had I not noticed that before? And will it be like that forever?

The centrifugal force of going around a corner had been making my scalp move against my skull. Normally this wouldn't be a problem, except where your scalp is effectively glued to your skull and won't budge. It bloody hurt.

So, word of warning. I have no idea if this is normal but it you've had a craniotomy then don't lean your head on a headrest when going around corners in vans. Oh yes, or over speed bumps.

My one monthiversary.

Suddenly it's one month since surgery. Wow.

I'm celebrating, on my own, in bed, with a migraine. I'm really disappointed. I knew it was a long shot but I was really hoping that the tumour had been the cause of my migraines.

Rubbish.

No longer an airhead.

I realised today that the clicking has stopped in my head. I wonder when that happened?

At first, after surgery, my head clicked and squeaked all the time, there were bubbly sensations and noises to go with it. It wasn't unpleasant, just weird - I actually quite liked it after a while.

After a few weeks it started to come and go. Some days there was nothing, and then it would be clicktastic the following day. It was always much more common first thing, after I'd gone from horizontal to vertical. Once, as I came downstairs in the morning I had a rush of bubbles moving through my head with every stair. I went back up to do it again, it was so funny.

But now it's stopped. I'm glad in a way, as that means that there's no more air in my head and it's healing. But I also miss it a bit, it was weirdly satisfying.

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.