Monday, December 24, 2012

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!

Wednesday, December 12, 2012

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,

Monday, December 10, 2012

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!

Saturday, December 08, 2012

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.


Friday, December 07, 2012

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.

Thursday, December 06, 2012

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.

Tuesday, December 04, 2012

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.


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.

Monday, December 03, 2012

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.

Saturday, December 01, 2012

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.