What it's like having an MRI.

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

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

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

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

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

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

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

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

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

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

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

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

Sleeping. Or, more accurately, not.

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

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

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

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

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


Ok, let's go.

1. Lack of curtains. Easily fixed you might think, but requiring decisions. Difficult ones! We have a huge bay window with shutters on the bottom half. The curtain pole we inherited was never fixed on properly when we moved in, and finally gave up the ghost about a month ago, so we took it off completely.
   
   The question is though, blinds or curtains? Or both? The other question is, curtain pole or rail? And the other one is, fix the curtain pole (or rail) to the wooden frame or to the wall? And how much would it need to stick out in order to allow the curtains to fit over the shutters? And how to measure it properly, given the bends needed for the bay? Also - what colour curtains?
   
   I am paralysed by indecision. And awake.
   
   In other news, there's a street light ideally positioned just outside to shine directly in ones face at a certain point in the bed And if you move to avoid it, then it reflects in the wardrobe door - directly into ones face. Also, the sun has a habit of coming up each morning, and since British pretend summer time started recently I think that's probably going to get worse.
   
   
2. The bloody cat. In an attempt to find out if Oliver is allergic to said cat, she is no longer allowed in the bedroom. Plus, sometimes she makes this horrendous smell, which I won't go into. Not impressed by this turn of events, she has taken to scratching the bedroom door repeatedly in the dead of night. She even adds dramatic pause for effect, then starts up again. She has amazing stamina actually.
   
   
3. The radiators. Since the new boiler incident about two months ago, the radiators make a clicking, groaning, straining, hitting-self-with-spanner kind of noise every morning. It's really irritating. I'm always just waiting for the next click.
   
   
4. Being pregnant. Weeing. Or specifically thinking I need to wee when I know that I actually don't need to. Also, not being able to sleep on my front (preferred sleeping position for over 30 years) or back (in case of aorta-squashing). This results in major paranoia about whether I'm harming unborn child in my sleep, by depriving it of blood whilst merrily dreaming away. Ha. And another thing - heartburn. Sigh.
   
   
5. People breathing. And turning over. How dare they? Actually I'm adding this in for effect as Oliver is away this week so he really can't be held to account. I can't hear him breathing from Germany.
   
   
6. The bin men. Rudely awakening me (I know - I've used this already, and it isn't Wednesday). We have single glazed sash windows, which are lovely but not very good at sound proofing. Despite initial concern when we moved in about the level of outside noise, mostly it's fine. If an argument does happen to take place just outside our window, I generally find it quite easy to drop off to sleep again (plus it's quite entertaining).
   
   The bin men on the other hand, Jeez Louise. Do you have to make such a song and dance about it? Will that bin lorry rev any louder? Can you make more of a crashing sound with each bin, getting closer and closer with each crash and shout... then sloooooowly, further away down the street? Maybe if you dropped the bins from a bit higher up you could get more volume going on the crash, but frankly I doubt it.
   
   And what - is every day bin day now?
   
   
7. The car alarm. I'm not sure it is a car actually, maybe a building somewhere opposite, but it goes off with alarming (ha ha) frequency. Only at night. See previous post when just out of hospital.
   
   
8. This blog post. Gah. I've been composing this all night in my head, which has inevitably been keeping me awake. It's now almost time to get up. The radiators have stopped clicking, the cat has given up scratching, the husband isn't here, the car alarm isn't screeching and the bin men are long gone. Even the street light has gone out - although it is broad daylight.
   
   Perhaps my time would be better spent getting a doze in instead of ranting on my iPhone.

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!

Wherefore, whyfore, whateverfore.

It has been brought to my attention today, by my extremely knowledgeable husband, that I don't actually know what wherefore means. Well I do now, but I didn't two days ago. Or actually an hour ago. I mistakenly thought that the where, in wherefore, would mean where. When it clearly means why. Obviously.

Even after the My So-Called Life days and my massive girl crush on Claire Danes, I never did get around to watching Romeo and Juliet (and no, I didn't read it either) but I'm not sure that I would have picked that up anyway to be honest.

So there you go, although "why are you a driving license?" doesn't make much sense, I'm leaving it as it is. I quite like it. Although I do feel a bit stupid.

Letter from the DVLA.

Timely, after I posted about this just yesterday.

Every time I get one, I'm simultaneously overtaken by excitement (at prospect of being able to drive again) and terror (in case it's a speeding fine, which - given that I haven't been driving for over six months - is highly unlikely. But it still get's me, every time).

It was a letter to say that they have received my application (hurray!) and that they've passed it on to some department (ok...) and that it will take another twelve weeks to get a response (boooooo!). They ever wrote twelve out in letters, contrary to the Guardian Style Guide, in order to disguise how many weeks it is. 12 weeks! Jeez Louise, what are they doing that can possibly take 12 weeks?!

Wherefore art thou, driving license?

I could really do with my driving license back now.

It's frustrating having to depend on people to drive me around. And I miss it, I love driving. I couldn't wait to start learning to drive as a teenager and have never understood why some people don't like it. Growing up in rural North Yorkshire, being able to drive meant freedom. It feels like about time I had that freedom back.

I've been a bit eager with reapplying for my license. The minimum you (or me) have to give it up for is six months, post my particular type of surgery for my particular type of tumour. The rules say you can send in an application up to eight weeks before your six monthiversary (not their official terminology), so I applied seven weeks and six days before the 24th April. Countdown.

There are some hoops, as you can imagine. I'm not quite sure what all the factors are, but it isn't uncommon for the minimum term to be increased. In fact the average is apparently a year or more, so my fingers are firmly crossed.

One potential problem is that my original biopsy report said I had seizures before diagnosis, mistakenly as I've never had a fit. Although this has been addressed in my records, if the DVLA see the wrong version and think I've had a fit, then the minimum term suddenly explodes. It'll all be sorted in the end of course, but given that letters and stamps (bonkers) is the only method of communication, and the DVLA require a six week turn around time for each query, it can soon build up.

And I'm getting impatient!

Thank goodness I surrendered my license though - if they retrospectively take it away, then you need to take a driving test again to get it back. As if! I still have nightmares about the first time. And the second...




p.s. I have now been schooled on the correct meaning of wherefore, as used in the title of this post. See here for record of my embarrassment.

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.

Have you seen my brain?

Last week I managed to get hold of a copy of my medical record, as part of my quest to find out if I had a blood transfusion during surgery (I didn't). I had to pay for it like, but it's a fascinating read. Things I faintly remember happening and things that I had no idea about are documented in black and white - it's a relief to be able to read through the sequence of events that led to my diagnosis and then surgery.

Anyway, the thing that got me thinking was the notes from the surgery itself. It made me realise that several people have actually seen my brain. I don't know how many or who they are, isn't that strange? It seems like an intimate thing, my brain. There it is just minding it's own business, never intended to be seen by human eyes. And yet some people have actually seen it. In the flesh, as it were.

When I was little we (my sister and I) stayed at my granny's for a few weeks while my parents moved house. I must have been about five. I remember this book at granny's that I read every night. I have no idea what it was called but it was about a boy (maybe a prince?) who had been tasked with finding something that no man had ever seen before. Not sure why.

After much searching and failed attempts, he finally came up with an unhatched egg out of which popped a baby chicken at the correct moment. My five year old mind was blown. Nobody had ever seen this chicken before. Nobody, ever. I'm not sure why this had such an effect on me, and I hadn't thought about this book for years. But the notion that someone had seen my actual brain brought back the same sense of wonderment.

I wish they'd taken a photo, I'd quite like to see my brain too.

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!

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.