Thank you NHS. Again.

You know how you should always wear respectable underwear in case you get hit by a bus and people see your pants (or something...), well, yesterday, I failed Rae. She was wearing a once-white-but-now-grey skanky vest when the ambulance turned up, and even that got stripped off her fairly quick.

This year alone, I have so much to thank the NHS for. I had multiple scans during the late stages of pregnancy with Rae, along with the routine midwife care. I had an emergency MRI to check the tumour hadn't come back after some odd symptoms during the pregnancy, and another one after so they could use contrast. I had a planned section delivery for Rae and all the drugs and care that goes with that.

Alfred had immunisations. Rae had three rounds too, and the BCG. And me and Alfred both got flu jabs. Alfred had his two year check up and Rae has regular sessions with a health visitor.

Rae had a full scale blood investigation for several months tracking her dodgy blood cell count. I got a bit of metal stuck in my eye, and ignored it long enough to go rusty, requiring two scraping sessions to fully remove. I've had two bouts of mastitis, requiring a course of antibiotics each. And then yesterday, Rae couldn't breathe, choked, and went grey and floppy.

We called 111 for advice and they sent an ambulance. I know that many people have had bad experiences with the NHS, but I am continually amazed by the service, the logistics, and the people who seem to work endlessly and thanklessly. Within minutes a guy turned up, he said he was an advance paramedic. He said he goes to urgent cases in his car to get to a scene quickly. He said it was nice to see someone alive. Sheesh.

Then the ambulance, much to Alfred's excitement. They took us straight to paeds A&E and there we saw various people, had tests, x-rays, more tests, got medication, instructions, more tests and a lot of advice. Seamlessly (although over quite a period of time). And FOR FREE.

It shocked me that things can go wrong so dramatically and so quickly. Rae is very clingy today, which is lucky because I'm quite clingy with her too. Tomorrow she will be six months old, and this is another reminder to never stop appreciating what we have.

Thank you NHS. Again.



I support #juniordoctors.

Now we are four.

When Alfred was born I had no idea what to expect, but this time we had an inkling. Excitement and trepidation gave way to sheer desperation towards the end - I was definitely ready to have this baby!

And now she is here, and we are four. 

I've always been interested in sibling placement, and how that affects who you are. Me and Oliver are both second children, and very different to our siblings. In fact I don't know any siblings that are similar, so I can't wait to find out how different she is from Alfred. 

So far, tiredness and c section recovery aside, everything is going really well. Alfred has been wonderful, as has Oliver and my mum. A whole new chapter begins :). 

Rae Rebeka Morley, born 17th June 2015. 

All clear.

Having completely worked myself up, it's a huge relief to report that yesterday I got the all clear again. Phew.

A couple of weeks ago I saw a migraine specialist and he was looking at my scan when I entered the room. He wouldn't say much about it other than it "looked ok". If my life were a film (it should be) then I thought this would be an ideal plot to make me think that everything was ok, only to BOOM reveal the return of a brain tumour after all. Surprise!

I was already feeling a bit nervous in the waiting room yesterday, when I was called in by Mr Bhangoo himself. Now, I don't think I can adequately explain how I feel about Mr Bhangoo. The last time I saw him I was still mostly under anaesthetic and couldn't move for terror at the feeling in my head. I don't remember what he said, or what I said, but I remember the shape of his turban silhouetted against the bright hospital ceiling lights. I couldn't really focus my eyes to notice anything else about him.

Since that day, I have thought about him often. This man has seen inside my head, my actual brain, and he has saved my life. He led a team that performed an incredible task, just for me.

In the waiting room yesterday, he called the patient before me and I heard him introduce himself. My mouth dropped open and I just stared. Completely lost self awareness - here he was! After all this time! Last year's scan results were delivered by someone, I don't know who, in Mr Bhangoo's team. It was a quick meeting as everything was fine. So yesterday I just wasn't expecting to see the man himself.

I watched him come out of his room and get the medical notes of his next patient. I was mesmerised. It was all I could do to not run across the corridor and throw my arms around him. But when he called my name (ME!) I was suddenly paralysed. Starstruck. And terrified. If the main man himself, the one who is in charge, the big boss, was seeing me, then there must be a problem. This is not good news.

I tried to convey all of this thought process to Olly through the power of my eyes. Not very successfully. As we entered the room I was steeling myself for what he was going to say. I was ready to hear it - how big? Where abouts? Operable? How long until surgery?

But my life isn't a film, and it was just Mr Bhangoo's day to do clinic. And my scan was fine. I don't have a brain tumour and I got to meet the man that saved my life, again. I have since thought of lots of things I would like to have said to him. Various ways of thank you I suppose. And maybe just a little hug.

Em arrrrrgh eye.

Yup. It's that time again. Next month is April, and it isn't April's fault but it has been linked in my brain to all things, well, brain. Poor old brain.

I have had a sudden flurry of NHS appointment letters through the door, scans, consultations and a meeting with the "headache clinic". That one was a coincidence but somehow adds to the pressure. When I say scans, I mean scan. And consultations, consultation. I don't know why I feel like exaggerating things. Maybe because I know it's no big deal really and I'm trying to justify the panic.

I don't really need to write this post, I could just look up the one I did last year and copy and paste.

As I get further from the actual experience of brain surgery it gets more surreal and quite frankly, unlikely. It feels like something I made up once to tell strangers at a party in a bid to sound more interesting. Plus, loads of stuff has happened since then, like Alfred and... yeh just Alfred. But he's a big thing.

I'm rambling. As it feels so unreal, that doesn't quite align with physically going for scans and meeting with brain people. I really really really REALLY hope everything's ok.




PS. Pleased with that title. Just made myself chuckle. Yep, still got it.

About time.

Sometimes, quite suddenly, things that have previously been totally familiar and obvious to me become weird. Unfamiliar and odd.

During recovery that happened with reading. I'd never stopped to think about the words on a page before, they just are. But suddenly they seemed vulnerable and unanchored, like nothing was holding them in place. And although they were floating in the right position just now... what? I'm not sure what to be honest. An unarticulated threat.

It was unnerving and made me quite anxious. I didn't read a book for a long time and then at some point it became ok again. Words on pages just are again.

Now it's about time. Time only goes one way. That is such an obvious feature of time that it doesn't need stating, but it suddenly seems all at odds.

I met someone today who is going through what I went through exactly a year ago. She is the same age that I was and at the same stage in her life. She has the same worries that I did. All those things I worried about! What a waste of worry. 

It got me thinking. As she heads into surgery tomorrow, I will be boarding a plane on the holiday of my lifetime. With Alfred. It's certainly an image that would never have seemed possible this time last year. 

There was no way for me to know what would happen to me next or how I would recover from the surgery. And I would still have the same worries if I did it all over again. But from where I am now it seems like a colossal waste. Of energy and time. How is it possible that I didn't know it would all turn out ok? Brilliant in fact. 

A while ago I made a conscious effort not to worry about things so much. There's nothing wrong with preparing for the worst but once prepared, no amount of worrying can help. It's not that easy though, I'm a worrier at heart. 

But back to time. I can't get my head around the weirdness of being able to look back and analyse, but not forward. Time is so weird and unstoppable. Elastic but relentless. 

It's like being on a conveyor belt, with a curtain of fog in front of your nose. You can't stop moving towards whatever is in store for you. Bit of a wobble? Peak or trough? No idea. All the twists and turns of your history are mapped out in detail, but really I just want a sneaky peak at whatever's behind the curtain. 

This time last year.

A year isn't an arbitrary number of days, but a full earthly swing around the sun. After a particularly painful relationship breakdown, I had some great advice that I think is applicable to any major life change: the first full year, with each annual event, resets the normal and allows you to move on. Birthdays, seasons, national holidays and anniversaries. We can't help but compare them to previous years.

It does seem arbitrary though, 365 days. 'This time last year' is something I've been saying a lot. We didn't know. We didn't know that I had a brain tumour and we didn't know how that news would impact us and what it would mean. We didn't know we would have a baby. Everything is different now, and I can't articulate how changed I feel.

All along I have been marking the time passed since my surgery on the 24th October 2012. It has recently struck me that that date isn't as important than the one looming now. The day everything changed was much earlier. In fact I can't pinpoint an actual day, but a steady build up of days.

Oliver's birthday (yesterday), followed by a family weekend by the sea (today and tomorrow), then immediately to a couple of days in Poland for work. And that's where it all kicked off with what I thought was a migraine in a hotel lobby. I'd been feeling kind of terrible for a couple of months but I hadn't really noticed it creeping up on me.

The emails I sent to work explaining my absence throughout the following week are fascinating to read back, and my twitter feed gives a somewhat simplified version of events:

• 21st September: dark when i leave work, dark when i get up for work. hope summer starts soon.
• 24th September: business travel on ryanair isn't quite business class. not that i'd know.
• 25th September: quite enjoying working in a hotel lobby today. particularly the soundtrack.
• 25th September: a triptan, 2 pints of water, vitamin c tablets, apple juice, spoon of marmite, prawn cocktail crisps. hot water bottle. bed. die: migraine.
• 27th September: in bed with a bag of peas on my head. @omorley is singing give peas a chance and i smell of peas. not in a good way. migraine, peas off now.
• 1st October: love the nhs.

I can't quite explain the fascination I have for this annual comparison. I continually marvel at the difference to today, but there is something else too. Would I go back to a year ago? Would I choose a different path if I could? No. I have developed as a person and learnt a lot about myself. It's been a worthwhile journey.

But it seems an anniversary to make a note of in some way. I feel almost tearful at the thought of this time last year, and as if I keep banging on about it. As per the advice above, maybe I'll move on after this. We'll soon have been through every annual event and the new normal will have been set. Time to look forward rather than back.

(There is no button and you can't go back.)

Human magic.

The human body is amazing. The capacity we have to heal (physically) astounds me, and I've had more opportunity to witness this in the last year than the rest of my life put together.

Just over two weeks ago I got out of bed and walked, took my own thigh high stockings off (not as glamorous as they sound, and also not an easy feat at the best of times) and showered - less than 24 hours after major abdominal surgery. Nearly ten months ago I walked home from hospital two days after having my skull sawn open. That's mad. 

And then there's Alfred. My body grew him, from, like, what exactly? He didn't exist at all, and then a little sac existed that he would grow into, and then he slowly started to exist. And suddenly here he is, fully formed. He has forehead wrinkles, and knuckles. Already there. And he knows to rub his eyes when he's tired. How does he know that? Where there was nothing, there is now Alfred.

There are so many cliches around having a baby. I found them all incredibly dull before Alfred arrived, and am slightly piqued that many are turning out to be true. One thing that we were consistently warned about is how fast he would grow. It's incredible. His face changes daily and he has grown out of clothes already.

Before he was born I had this wonderful plan to take a photo of his face every day so that we wouldn't forget. Except I keep forgetting. I am torn between wanting him to stay this little forever and wanting him to be grown up so I know what happens to him, what he does and what he's like. It's slightly terrifying how much of a blank slate he is right now, and the thought of the tightrope we have to walk in order to give him the best launch pad. 

Either way, he is growing. At quite an incredible rate, it's like magic.

So nearly there.

It is obvious, but the thing about a planned caesarian is that you know when it's going to be. That's really weird. Since we found out the date, time has been on warp speed - which I wasn't expecting. I thought it would drag.

Now that we're down to single figure number of days, things are becoming increasingly surreal. (I'm being intentionally vague about the date. I'm not sure why it's important to me but a mixture of privacy and still wanting an element of surprise has meant I've tried to keep that information in the family only. I haven't even told the girls.)

The nearer we get, the less it all seems like the brain tumour. Earlier on all I could see were the similarities but now it couldn't be more different. I'm so excited! I can't bloody wait to meet him, and I can't bloody wait to be not pregnant. 

But mostly it's not about me, and that's what sets this apart - not just from the whole brain tumour experience, but everything I've ever known. I was so isolated throughout that whole episode. I had wonderful support but at the end of the day it was just me on a trolley that had to go through with it. Now, it's everyone. As a family. Two families. One massive family and the creation of a new tiny family. It's about all of us. 

We are officially ready. That clever thing that kicks in towards the end of pregnancy which gives you the courage to go through with the birth has most definitely kicked in. The uncharacteristically boiling weather, the permanent uncomfortableness and the lack of sleep (I know I know) has contributed. I'm done with talking about it now, I'm bored of the advice, the condescension and the lack of other topics of conversation. I am ready. We are ready. We have all the stuff. The bags are packed and the freezer is stuffed full of food. We have a buggy in the hall! 

And yet it's still so surreal. We have a buggy in the hall! 

Dreaming. And reality.

I can't help but compare pregnancy to brain surgery. They represent such different things in my life but the similarities are clear. Same hospital. Same sense of unknown. Same sense of waaaiting, and not feeling quite on form. It's like life is suspended for a little while until this big scary event happens, and then we'll take stock and move forward with whatever we're left with. In a negative sense after brain surgery, and a positive sense after pregnancy.

Getting ready for surgery is obviously a similarity and is bringing back some memories and associated anxiety. But this time I am really excited and actually can't wait: we'll get to finally meet whoever is in there. He can kick me just as well from the outside where I can see him. Time is moving really quickly now, and the last week has suddenly felt different. It is becoming real.

One big difference is dreaming. I remember thinking it was odd that I didn't dream at all in the run up to brain surgery (which was probably a good thing...) but now - jeez. Some really weird dreams have been going on. I disturb myself sometimes.

Actually, the dreams have been quite vivid throughout pregnancy, but it's only this week that they've become about giving birth and babies (or baby dinosaurs in some cases). Like I said, it's becoming real.

Things contributing:

1. Tomorrow, we're going for a 32 week scan at Kings so we'll get to see him again. I'm simultaneously really excited and a bit worried. Is this all too good to be true or is something horribly wrong that we don't know about yet? I think it's normal to worry a bit, and I'm looking forward to it being over just so the anticipation and anxiety is gone. I'm also really looking forward to seeing him - just to check he's really real. But 32 weeks! That's so very nearly 40 weeks.
   
   
2. Then there's NCT classes that we've just started a couple of weeks ago. The video we watched, and just very frank conversations with other pregnant people (and a collective sense of fear) has definitely made it more real.
   
   
3. And yesterday we saw baby H, a friend's lovely little boy who is now three months. I have seen him a lot but this time it just seemed to kick in more - we're going to have one of those soon!
   
   
4. Also excitingly, this is my last week at work. When I finish that'll be it - proper countdown mode.All the things I've meaning to do to get ready will get done, and then we'll be ready. Hopefully. Everything is finally getting there, the things we've been talking about for months are finally happening.

Despite the similarities with brain surgery and the impending sense of something momentous that we're hurtling towards, it is with excitement and impatience instead of dread and fear. It feels like we're suspended right now, but that reality is not far away. Bring it on.

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.

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).

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.

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.

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

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.

Feeling the effects.

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

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

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

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

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

The results.

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

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

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

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

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

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

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

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

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

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

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

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

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

Scar musings.

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

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

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

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

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

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

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

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

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

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

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

No longer an airhead.

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

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

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

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

Flying time.

I'm not sure where all the time is going. I've been out of hospital over three weeks now, and I can't think of anything of value I've done in that time. That's a lot of days to fill and I can't remember any of them. What have I been doing?

I've got a list of important things to do, but I don't even know where it is anymore. Let alone what's on it. I have a varying sense of unease that I'm wasting this time, I'm usually quite good at getting things done but now I don't care enough to do them, but still care that I'm not doing them.

When we moved house, about two months ago, we decided to do away with the telly. We didn't really watch it anyway, except for formula one which we can still watch online (yes, we're paying the licence fee). I'm quite glad we did that now, as it would be too easy to slump myself on the sofa all day watching daytime telly never getting anything done.

Much like now really, but less sleeping and more telly-watching. I would feel worse about that.

But back to the time thing, I wrote before surgery that time had been elastic. It's strange how living through it takes ages, but when you look back you can't believe how much time has gone by in such a short space of, well, time.

In one sense I have been wishing time away, for example I can't wait for this Wednesday - it'll be four weeks and I can go swimming. And also wishing it would slow down so that I can recover more, faster, before I go back to work.

Looking backwards, it feels like time has gone so quickly. It's insane that I went to the fireworks a week after getting home. It was eight days after surgery and I was frustrated that I couldn't walk faster. I'd just had brain surgery what did I expect? But at the time it felt like I'd been home for months.

I wonder if I'll look back on this time in a similar way. Three and a half weeks seems ages from where I am now. I wonder if from a future perspective I'll see it differently.