A controversial decision.

There is something I would like to confess. To just throw out there in the hope of diminishing the power it holds over me.

I want to have a caesarian, and if all goes to plan and nobody makes a sudden early appearance, I will. There is no medical reason for me to have a caesarian, and so I'm painfully aware of what this might look like, and the judgements that people might make. 

This hasn't been a quick decision to come to, and although I feel happy to have made it, I still feel ashamed. Which is a shame. It's difficult to not get defensive about why I have made this decision, and it is very tempting to use last year's surgery as an easy way out of a difficult conversation. I want to understand more about why I'm ashamed, and to explore it a bit.

I know loads of people who have had children, and none of them chose to have a caesarian. I am full of admiration for them. A high proportion of those I know did actually end up having sections, as an emergency measure in the late stages of labour in order to save either the mother or the baby's life. I am the first person I know to choose to have an elective caesarian.

A few different things contributed to this decision. 

Past experience of childbirth.
I am very close to my sister and was there for the births of her two daughters. Both were traumatic, and ended in emergency sections, for different reasons. The second in particular was touch and go, with both their lives being in quite some danger. I know this has no bearing on how childbirth would be for me, we have different body shapes (people have been known to mention my "child bearing hips", much to my delight) and we are different people. 

What happened to my sister is unlikely to happen to me. But it isn't just my sister, it's loads of people. I don't actually know one person who's giving birth experience wasn't traumatic. This isn't a good thing in my book, especially because...

I'm a chicken.
I have always been afraid of pain, and childbirth is well known to be painful. Obviously I realise that people have been doing it for ever. It's a natural process that the body is perfectly designed to manage. Pain relief or no pain relief, this is arguably what I'm here for. But I really don't want to do it. Just thinking about it makes me really anxious. 

I know I could do it if I had to, last year taught me that. But if there is an alternative then I'd like to take it. Last year there was no alternative, and that was a horrible feeling. I had to be brave and I had to agree to my skull being opened. There wasn't another option. 

Clearly, a caesarian will hardly be pain free, but it's a pain that can be anticipated and understood. And prepared for. 

I want to know what to prepare for.
Childbirth is unpredictable. And unknown things happen. I don't know where to start in preparing myself for it, or for any of the things that can go wrong. I feel that choosing to have a caesarian from the outset means taking control. I can prepare for the operation and can look into exactly what it entails and how to best be ready for it, and best recover from it. 

An added benefit is that I'll know when it will be in advance, so we can make sure we're ready for whoever is going to be joining our family, and I can plan properly. We also won't have lost a night's (or two nights') sleep labouring. Although I reckon maybe lost to nerves instead. 

Additional bonus things.
I really don't like the idea of tearing. There, I said it. Or incontinence.

Having made the decision, and being whole heartedly supported by Olly (the only person who's opinion really mattered to me - it's his baby too), I immediately felt a whole weight of anxiety lift. There was a big black cloud over the pregnancy that I wasn't quite allowing myself to think about, and now it's gone.

I believe that it is better for the baby if I am less anxious during pregnancy and this decision has certainly achieved that. If he arrives unexpectedly then I will obviously cope. But by then I will have progressed through the majority of the pregnancy anxiety free, and the benefit from that will have already been banked.

I haven't really spoken about the risks here, but have gone through them with my midwife and various consultants. I'm sure I will go through it all again with them before we set a date. If there was a clear indicator that a caesarian would be worse for the baby, then this would be an entirely different matter.

I still feel like I'm being defensive about it, having just reread what I've written. It's a difficult subject that many people have strong opinions on. Having said that, everyone I have spoken to so far has been really supportive, so I don't quite understand why I'm so defensive. Maybe it's the selfishness of the decision - am I doing this for me, or for the baby? Realistically, I am the one benefiting.

Being honest, I would have always wanted to have a caesarian, but before brain surgery I wouldn't have had the conviction to ask for one. I'd have felt like I had no right to take the "easy" option. Now though, I'm less afraid of what people think (although clearly still bothered by it, just not enough to change my mind).

I have new priorities now. I am going to do what I think is right for me, and our family, based on our situation.

A life in three phases.

In a discussion a long time ago, Oliver first introduced me to the idea that humans typically like to make patterns out of the data they have access to. In order to make sense of things. Things that happen to themselves. As a species, we would rather have a bad explanation for something than no explanation at all. (He can explain it much better than me, and I may have misrepresented what he said a bit here).

Since this discussion I have noticed I do it a lot. I always have some theory going on why I feel a certain way or think a bunch of things. On why my feelings or thoughts might change or take an unexpected turn. It comes out a lot in this writing, because it drives me to think about things so much... and assign wild explanations.

And so, I have created for myself a new life model that I'm feeling rather pleased with. Bear with me, it may take a while for me to get to the point.

Not long ago, I saw my life as a period of time up until the present moment only. I felt frustrated and frightened that it was almost over, that somehow I had wasted it. Made some terrible decisions and lost time in the wrong places. The future was invisible to me, something I didn't acknowledge.

Last year's brain tumour experience immediately jolted that view of my life into a totally new perspective. I suddenly saw my life as a much longer whole, extending way into the future and I was only (hopefully) a third (for example) of the way through.

Immediately I felt incredibly positive, in contrast. It was a very strange shift - instantaneous, and significant. One end of the spectrum to the other. I tried to explain this at the time, in a post about some of the positive parts of the experience (point five in the list). I realised that there was so much for me to still experience and learn. There's a lot of football to be played yet.

In the vast amount of self analysis and writing I did throughout that time, I started to think in terms of "pre brain tumour" and "post brain tumour" as a way of explaining to myself the different ways I had started to think, and in some cases, act.

I only mention this as I find it really interesting that I had this way of explaining things about myself, to myself, which worked very well for a short amount of time - until I found out I was pregnant. One small (but very significant) additional piece of information changed the pattern again. And now I have my new model. Here it is: my life, in three phases.

Phase one.
This phase is from when I was born until the day my first child is born. Overriding characteristic of this phase is selfishness, but not necessarily in a bad way. All I really have to do is look after myself. I can do what I want, go where I want, when I want, for whatever reason I want. I am bound only by the choices I make and the rules I choose to live by. But essentially, they're my choices. I am responsible for only me.

Phase two.
From when my first child is born, until all of them (eek) are grown up and "ok". There is a weakness in this part of the theory, which I am overlooking for neatness purposes. This phase basically boils down to responsibility for others. I am anticipating a big shock when our first child is born, that my first priority will for the first time not be me. I will need to forego sleep, independence and choices. I will make sacrifices - in terms of working and sharing food (I am Smithy in this clip) and plenty of other things that haven't even occurred to me yet. 

Although I am ready and willing to make these sacrifices, I won't really understand how it feels or how well I will do it until it happens. It will no doubt be difficult and scary - in fact phase two is the hardest work of all the phases (according to my model), but also the most rewarding. I get to see our children grow up, achieve things and become independent themselves. This is the goal of phase two, to give them the best possible start in life that I can, in order for them to successfully reach phase two, too. 

Phase three.
At which point, I will move on to stage three. Grandparents! This isn't just defined by my kids having kids, but more on them becoming settled and happy and responsible for themselves. There is the weakness, how on earth do you know when that has happened? (I know my mum still feels responsible for me now - but I think it will be just become obvious when the time has come).  

Hopefully by the time they do have kids they will be as settled as I am now. I think the relationship between us (me and my children) will change as they grow up and enter phase two themselves, and they become more aware of their own journey.  

And I can become selfish again, and do all the things I've been making a list of during phase two. It will be a time of enjoying a renewed freedom, as well as a growing family that all stems from our initial tiny family. Phase three sounds like awesome fun.

I realise I am writing this from a completely naive standpoint. People are keen to tell you when you're pregnant that you have no clue what's coming. Gleeful, and sometimes patronising, reminders that we don't understand how things are... yet. But that's the beauty of my model - it's just mine, so I can (and most certainly will) change it when I get access to more information. To help me make sense of what I am feeling.

But what's really great about this model is that I'm still in phase one - admittedly not for long... but there is so much more to come. Which kind of brings me back to where I started, the future suddenly is an exciting place, full of opportunity and fun as well as hard work and challenges. It's an action-packed future - there's loads of it still to be experienced.

This is in major contrast to my previous suspicion and bleak view of what's ahead, the future was something to be mitigated, prepared for, second guessed.

I'm really looking forward to the future it's going to be brilliant. But right now we have less than three months of phase one left, so I'm off to make the most of being selfish.

Good eggs.

It's struck me recently how great people are. There are clearly some pretty nasty people around (the news this week is full of sex offenders and kidnappers) but when you meet a good one (Olly calls them good eggs), it has the power to reduce me to tears. Although most things do now, thinking about it.

The masses of people, some of which I'd never met or heard of, that sent well wishes when I was ill was astounding, and played a huge part in keeping my spirits high. But it's some individuals who really stick out as having made an unexpected difference.

Here are just two examples out of the many.

My hairdresser. I'll always remember how well she dealt with the whole thing. Didn't make a fuss, just cut all my hair off while I sulked. She continues to be wonderful and just make life easier for me, I don't have to explain why my skull is bumpy. And she gives me a discount - just because.

And my support nurse, I've mentioned him before I'm sure, he's consistently gone beyond the call of duty throughout all of this. Out of the thousands of patients he must have seen since me - and I was only in for two days - he firstly remembers me, and secondly is so goddamn efficient. This week he personally helped me try to tackle the DVLA (although it will still take them six weeks to look at a fax - a FAX, like how last century? Just LOOK at it people. And give me my licence back grrrr. I cannot resist a DVLA rant whenever the opportunity arises) and then emailed me to tell me what was going on.

This isn't new but has been repeatedly obvious to me over the last six months. A spot of kindness when you're least expecting it can make someone's day. Maybe even make a real difference to how they're feeling and will subsequently cope with a situation they're facing. You just don't know what anyone else is dealing with, so on the off chance it's best to be kind by default. I'd love to have that kind of influence on someone else.

Scan results and a glimpse of the future.

This week I was back at King's to see the neuro team and hear about the results of the MRI scan. As documented here, I was nervous about it. It felt a bit like waiting for my A level results; someone, somewhere knew how I had done, it was all written down and in the system but somehow I didn't know myself.

A part of me didn't really want to know as it would mean confronting the possibility of bad news. And another part of me knew I was being stupid, it's so early, and these things grow so slowly, there was incredibly low chances of there being some tumour regrowth. It crossed my mind that I might be dramatising the whole issue somewhat.

I made a big deal about getting there on time, I didn't want to rush getting to the hospital as it stresses me out being late. I think it was easier for me to occupy myself with timings and logistics. Ridiculous. We were there early and the waiting room was packed and really hot. We sat in the exact same spot as I had waited alone, last time. That was the first time I articulated I had a brain tumour to a poor woman who offered me an epilepsy leaflet. It brought a lot of things back - how far we'd all come!

Waiting rooms are stressful places. We were under a telly that was on quite loud and I couldn't hear the names the staff were calling at the front. That stressed me out. And then a man had a fit and suddenly the waiting room sprang into activity. People moved chairs out the way, nurses came running with pillows and a screen. Wheelchair and stretcher lined up behind.

It can't be uncommon in that particular waiting room, but it didn't do much for the sick feeling in my stomach. I nearly started to cry - it's so selfish but I just kept thinking how lucky I am not to have epilepsy.

Then we were up, I was really glad to get out the waiting room. As we walked into the consultation I was at the front, Olly and mum behind, and finally the person who we were seeing. (I must try and remember their names when they introduce themselves, I have no memory of her name or what her job was). There was a picture of my brain up on the monitor, and it looked bad to me. There was a white band surrounding the area where the tumour had been. From my limited experience in MRI scans, white equals bad.

Interestingly, I don't remember feeling anything about this, we all sat down in a row and mum and Olly introduced themselves while I just stared at my brain. Blankness filled my actual brain. So this was it.

The first thing she said, while gesturing to the screen, was that everything looked great, clearly. No tumour remained, and the "post surgical change" looked fine. Oh. Did it? Mum and I asked the same thing at the same time - what was the white bit?! Post surgical change apparently, perfectly normal.

I was immediately incredibly grateful that I hadn't looked at the disc of the MRI scan I'd had at home for over a week. That white bit would have been grossly misunderstood by me and I would have had to live with that terror until this moment. Phew.

So that's the headline, we asked a few questions and she felt my scar and that was it. I'll be back for a scan in a year. A whole year!

At home I felt weird, I should be over the moon and celebratory. But I just felt weird. Ok so there's no tumour there now, but that's not to say it won't start growing tomorrow. In fact, maybe it has started growing already but is too small to detect.

It felt like a (just a) reprieve, and I got a glimpse of many years and many scans and many consultations to come, where the best news I can hope for is "not yet".

That was a bit depressing, in contrast to everyone around me being really happy. As always with this experience, my feelings are so complicated and contradictory. It's bittersweet.

So we did what anyone would do, went to the Dulwich Tandoori for tea. Sod the heartburn.

And in due course, as I should have expected, I feel better now. A year is a long time for my next scan, so they must be pretty confident. And it's long enough for me to forget about it, anyway we're going to be pretty busy come August with a new distraction.

Now, two days later, it's back to normal. I'll have a wobble every time I get results but its good to know how quickly I bounce back to normal life (assuming good news).

Some good things.

It's only gone and been half a year already. Today is the 24th, which, aside from being a six month marker from surgery, is payday. And sunny. And on top of all that we're in Brighton, so good news all round really.

Reading and thinking.

A couple of things I've been reading recently have made me think. I have an obsession with reading news so this happens a lot.

Firstly the Boston bombings. In the following few days I read an article about people who had lost limbs, they were reported to be feeling lucky. The journalist of the piece I read expressed incredulity at this response, pointing out how unlucky in fact they had been.

This really reminded me of how extreme that feeling was in me after diagnosis and again after surgery. It wasn't just the fact that the tumour had been discovered before any permanent damage had been done, or the fact that my symptoms could have been so much worse or the surgery more debilitating. It was also to do with the way it made me assess things. Really strip back everything to see clearly what I need and want to be happy. Only to discover that I already had it - as well as so much more. So I was lucky to have it all, but also lucky to have now realised it, and on top of that the opportunity to stop taking it for granted.

It is complicated, but I'm still grateful for the experience and what I've got out of it, although I'm not sure if I would choose to have gone through it (given the choice). And I certainly wouldn't wish it on anyone.

So these Boston amputees, waking up with a limb or two missing, it would be understandable - expected even - to dwell on the fact that their lives have changed forever and they have a massive challenge ahead of them. But instead of feeling revengeful or depressed, they felt lucky. Lucky that they were still alive. To an outsider this seems mad. It's so impressive, human nature is really quite incredible.

Our experiences are very different of course, but I was struck by the similarity in unintentionally feeling the positives of a shocking situation. And looking to the future. Maybe this is just an initial response and it hasn't had time to sink in yet, but the resilience is inspiring.


The other thing I read was something that Richard Dawkins tweeted, from the NewScientist. It isn't new news as it was published in 2002 and I had read about it in a book called Incognito last summer, but this piece gave more detail. It's about a man, who's brain tumour caused a radical and sudden change in his behaviour, resulting in "uncontrollable" paedophilia. This behaviour (amongst others) stopped as soon as the tumour was removed, and in fact was a clear signal on it's return that the tumour had regrown.

There's a lot more to it, and it's interesting as it has moral implications as well as the standard side effects associated with brain trauma, but mostly it set me off thinking about my own experiences.

When I first read about this case, it was before I had discovered my own brain tumour and so, although I found it really interesting, it didn't have a personal impact. Now though, it reminded me again how lucky I have been. The location of my tumour was probably the best you could hope for. My concerns were all about permanent physical damage.

The fact that I didn't have to worry about potential changes in my personality or behaviour, is still such a relief.


Both these pieces just reminded me how things could always be so much worse. A gentle reminder of where I am. I don't want to live every day as if it's my last and to make sure I get the most out of everything I do - I just want to bumble along like normal. But it doesn't ever hurt to stop and remember all the good things.

Round and round again.

It's nearly time to go and see the brain doctors and find out what my scan said. I've reverted to type over the last few weeks and internalised the anguish I'm feeling and refused to think (let alone talk) about it. But I've finally noticed that that's what I've been doing, tried to work out why, and here I am writing about it in order to make the uneasy feeling go away.

I've spent some time today thinking about what questions I should ask. Which inevitably led to the same old cyclical arguments pinging round my head. It turns out that I've been quite successful in my plan to "not worry (think) about it until the next scan", so much so that my thinking hasn't progressed at all since I last thought about it. Which would make sense, seeing as I haven't thought about it.

Anyway. The same dilemma. This is how it goes:

1. First, I think, it would be useful to know some idea of precedent. In cases similar to mine (in terms of age, grade and location of tumour, pregnant...), what would they expect to happen? What is the likelihood of the tumour growing back? And where - in the same place? And when of course. And if it did, would it be likely to have gone up a grade? Or two?
   
   
2. Then, I think, would it really change anything to know how likely all this would be? It doesn't actually tell me anything concrete. Which of course nobody can do. Thinking through the options - if they say it's 98% likely to come back, then how would that impact on the way I live my life? Well, I think I would ignore the whole thing between scans and deal with it when faced with the results. Much as now.
   
   And if they say it's only 2% likely to happen, then I'm still going to wonder... And when scan time comes around go through probably this exact exercise again. There isn't much difference between those two extremes, in fact, in the way I would live.
   
   In addition to this, I think it would be better to go through life believing it isn't going to come back and then getting an almighty shock if it does. But dealing with it at that point and moving on.
   
   That would be better than living life in permanent expectation of a returning tumour - in order to minimise the shock if and when it does happen - only to find that it doesn't. I'd have wasted all that time and energy preparing myself, and who knows what opportunities I'd have passed up for an expectation that never materialised.
   
   And it's not like I can't cope with the shock, I've already done it.
   
   
3. The thing is, I'm used to looking at history to inform me of what to do. When I have a problem with a project at work, the first thing I look for is precedent. Has this happened before? Has anything similar happened? What was the solution, what worked or didn't work? This is all very useful information for creating a plan to move forward and resolve the problem.
   
   But here, there's no point having a plan as the precedent isn't actually relevant. In that it isn't directly applicable to me. It's just a possibility.
   
   So there isn't a plan, except to not have a plan. Unless the time comes when I need to make a plan, driven by scan results. OK, at this point, its decided. It wouldn't be useful at all to know likelihood of the tumour coming back. Job done.
   
   
4. Except it would be interesting to know right? Maybe with some idea of what has happened before...?
   
   
5. No, it wouldn't help. See above. End of. (Repeat).
   
   
6. At this point I have a little break from thinking, due to fatigue / banging head against wall. Then never really get back to it. Today I managed to get a bit of clarity and take it a bit further.
   
   
7. So I'm agreeing with myself, it wouldn't be useful to know statistics on likelihood of the tumour coming back, as only scan results can tell me what is actually happening.
   
   But what if the time comes when a scan does show some regrowth and I need a plan? What would the plan be? Here are some things I would like to know the answers to: how big would they let a tumour get before surgery? And would surgery be the only option?
   
   It's clear that surgery is my main fear right now, having to go through it all again - physically. But I'm sure in that situation it wouldn't take long for all the other fears to return.
   
   I think it would be useful to know now what the plan would be if that happened. And this is what I will ask about in the consultation. Also, what is the "detection plan" from now on - frequency of scans etc.

So, as things stand I have a few questions I would like to ask. All this assuming that my scan is clear of course. If it isn't then I guess I'll spring into plan mode anyway. Just have to wait and see.

I might as well get used to waiting and seeing.

Email out.

I've become a bit more self conscious about writing again. Hopefully that will disappear as I get back into it, but in the meantime I'm going to turn off the email function of Henrietta. After this one, posts will no longer be emailed out - although obviously they are still open to all at henriettafish.blogspot.co.uk.

Thanks for signing up in the first place.

Do I really want to know?

Yesterday I picked up a disk from the hospital with a copy of my MRI scan on it. It only took them a day to get it printed for me, and seeing as I paid an annual fee for a full copy of my records there was no additional charge. The Patient Advice and Liaison Service at Kings have always been brilliant and helpful and polite. But I wasn't expecting to have the disk so quickly.

I'm at work now, and I'm still thinking about that disk, burning a hole in the kitchen table.

I haven't looked at it. I wouldn't know what I was looking at. And I would run the risk of scaring myself stupid over nothing. But it's funny (strange funny, I'm not really in a laughing mood) to think that the answers to the biggest unspoken question of the last six months is lying on my kitchen table. Just minding it's own business.

This is only the morning after I picked it up. How on earth am I going to concentrate for over a week until my consultation?

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!