Scan day 2016.

This morning I had my annual 'toe ring removal' panic, but it came off quite easily when I actually tried. And the whole day seemed to follow that example - things are far more frightening in the run up, but you just get on with it when you have to. And then it's done.

Since my last scan I had a fragment of metal stuck in my eye (don't ask, I don't know) which I ignored for quite a few weeks until it got nice and rusty and I had to have it scraped out over several sessions. Horrible as this was, it didn't occur to me, until I was in the waiting room this morning, what it would mean to have a piece of metal in my eye. They gave me an x-ray to make sure (thank you thank you NHS) and of course it was all fine. Just another thing to stress about.

And then there I was again, ears stuffed with plugs and sponges, knees resting on a pillow (new design from last year - very comfortable!) and my head lost in an oversized clanging washing machine for an indeterminable amount of time. Which was fine when I got there. I quite enjoyed the lying down part actually.

That might be because yesterday I got a bit drunk which is a rare occasion for me these days. I thought it would distract me and help me sleep. It did distract me for a bit, but sleep was not having any of it. Sleep doesn't like alcohol, or brain scans. So I woke up really early and fretted. The kids slept until after 8am, MIRACLE, so I caught up on some of yesterday's Olympics on my own on the sofa feeling sorry for myself. It was really nice.

Incidentally, I was thinking earlier. I wish I'd done one of those fashion blog things, of scan day attire, from the very beginning - I'd have quite a collection by now. It still causes me a lot of anxiety planning what to wear (mostly because I would rather do most things than go out in public not wearing a bra). And I already can't remember what I wore in the early days.

For future reference, today I sported some hareem pants, a long vest and short floppy top and a ridiculous sports type bra thing. I took a normal bra with me to immediately change into afterwards.

Anyway.

Two things worry me about scan days. One is that I feel glum and tetchy and defensive. I am rude and thoughtless and I blame it on the scan and get away with it. I know I shouldn't do this but I still do, which really annoys me. I feel like after all this time I should just get on with it, but instead I take advantage of scan day to get a bit more attention than normal. I should just grow up and stop whingeing.

The other thing is that deep down, I don't think there is anything wrong. (Hence why I shouldn't be moping around). So if it turns out there is actually something wrong then I am woefully unprepared for it, mentally. And then the doubts start to creep in, just to mentally prepare in case, and then I really am a bit jittery and emotional and we haven't even left the house yet.

I hate scan day. It forces me to think about things I don't want to think about. And it forces me to contemplate different potential futures and it makes me selfish and introspected and a total bore.

And it is so lonely. No matter how many people you have waiting outside (and I was lucky to have loads today, singing "if you're happy and you know it" so loud I could hear it during the x-ray") you still have to do the scan alone. Nobody else is in that room. And it's so lonely in my thoughts too. Not for the first time, I wish I could swap brains.

Roll on results day HA. Not.

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.

Poor frontal lobes.

I got a hand written letter this morning on my way out the door, and it isn't my birthday. Intriguing. I read the bolded top line of the first sheet as I gathered last minute socks and Marmite sandwiches together, then stuffed it in a pocket to read later. It said this:

Study: Using virtual reality to investigate multi-tasking ability in adults with frontal lobe damage.

Excuse me? Frontal lobe damage? Whilst negotiating the front steps with a buggy and baby strapped to my chest, I furiously defended my poor frontal lobes. Damaged? Huh.

I'm all for studies, and I like that I could contribute to improving medical knowledge. And the virtual reality part sounds cool! But I'm surprised at how icky it makes me feel. I mainly plod along in life these days and don't often think about braingate, it certainly doesn't define me. Yet here's this letter. My name languishing somewhere in a database with a big red FRONTAL LOBE DAMAGE flag on it. That doesn't feel so good.

I'm going to do it obviously. just needed to get that off my chest.

A year off scans, yey!

Despite the law of sod, my scan was clear. Phew. It's always a bit of an anticlimax getting scan results, I psyche myself up for potential drama and then there's... nothing. Obviously that's a good thing, just a bit deflating and exhausting.

I noticed a few differences in the neurology department though. It was rammed. Proper Sergio Ramos. It's been busy before but this was something else, people were standing between the seats and spilling out into the corridor. Several consultants were running 45 minutes late. There was an air of barely suppressed panic, and not at all suppressed exasperation. 

One man wooped loudly for joy when his wife was called in, causing several chuckles, which was nice. And Rae made people smile too. 

And there was the inevitable man complaining loudly. But what I hadn't seen before was someone defend the doctors to a complainer. I've come across them loads in my nhs journey and always quietly seethed to myself. A woman properly told him, and I was full of admiration. 

It feels different, but it might be all the Labour leadership campaigning I'm reading. It feels like there is a real swing towards appreciating the nhs, by actual people using it, not just on social media. It's exciting. 

I was in with the consultant for about a minute and a half, we had precisely two conversations. 

1 - he said I was fine (that was the medical part over, in three words) and that next year (a whole year! hurray!) they would telephone me with the results in an attempt to reduce the circus in the waiting room. 

He said they were doing that for younger (oh, thanks very much, *swoon*) patients, with no complications. I said that sounds brilliant and that it must make things easier for the department, only to find out they are expected to do this on top of seeing the same numbers in clinic. Mental. I really don't know how they don't all have nervous break downs. 

2 - I asked how long I would get scans for and was told five years. And that's it, no more scans. I don't feel so great about that, to be honest. The original prognosis was 11% chance of regrowth in ten years, so what about the other five years, are they just going to not check? 

Of course I didn't mention that. I was aware of said circus in the waiting room and I was trying to process my thoughts quickly, so I just said ok. But now I'm worried about it. Which is ridiculous as it's still two years away, but I do like having something to worry about eh? 

Wavering smug face.

Today is my consultation following Saturday's MRI. Only having to wait two days for the results is brilliant, but I've been so confident about the outcome that I haven't even thought about it. Until now, 2:30am.

I'm confident because it hasn't been that long since I had a scan, an emergency one in April - fully convinced that a great big tumour had returned. I was wrong, the scan was clear. And I felt like a bit of a nob to be honest. 

I haven't been confident when receiving the results of a scan before. And what does the law of sod say about that eh? 

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. 

Don't read the internet.

A few weeks ago, I managed to thoroughly convince myself that not only had my tumour come back, but it had grown at super-speed and to terrifying proportions. What started as a few migraines, and a calm, logical thought process, very quickly grew into major hypochondria and internal panic, denial and general ridiculousness.

It's taken a few weeks for me to come to terms with what happened (which was absolutely nothing) and take a good look at my response to it. It feels like there is a lot to be learned from the whole experience.

The migraines and vision problems I had were (I think) justification for getting checked out, particularly in the context of pregnancy - there is a suggested link between pregnancy hormones and increased tumour growth.

My last pregnancy was so entwined with the experience of having a brain tumour that I can't remember it in isolation. The emotional recovery, and physical appearance (goddamn short hair!) was apparent throughout, and I actually found myself at the beginning of this pregnancy expecting a craniotomy to start me off. Yikes.

I think this may have played a part, it was like I was just waiting for it to happen. I read the absolute most negative possibility into everything that happened. The aura that comes with migraine? Must be tumour pressing on my optic nerve. I could go blind. How will I look after a newborn, blind?

And the final straw that drove me to middle of the night Googling (never to be recommended) was a numb hand. My right hand, for no apparent reason. This was what alerted my GP to the original tumour, loss of movement and feeling down my right side (also a common pregnancy thing, but I didn't bother reading about that).

By this point I had already had an MRI, and I was waiting for the results. I analysed in detail the behaviour and every single word the scan man said to me. It was ominous, I told myself, that he urged me to chase an appointment to get the results. He already knew by then what the scan looked like. And was that pity in his eyes...?

So I went home, cue major denial and didn't make an appointment. All the while absolutely convinced that I had a tumour and trying to work out how on earth I would manage with a toddler and a newborn whilst recovering from a craniotomy. Or maybe it was more serious than that and they would have to get it out before the baby was born. Craniotomy during pregnancy? Or have a very premature baby in special care? I decided the best thing would be to ignore it. Surely they would contact me if there was anything to talk about.

All the while people were telling me this was normal third trimester stuff, and logically I can see that it was. But I just knew it was a tumour, so I didn't listen. I spent a few weeks just not really thinking about it. And then I finally rang them up. The team explained that the scan was clear, they didn't want to see me, no need, nothing to talk about. Within minutes it was over and the full extent of my self delusion was exposed. What an idiot.

For next time, I'm sure there will be one, I plan to follow these simple rules:

1. if worried, get checked out
2. don't read the internet
3. get results quickly
4. do not read the internet

Scan day.

Meh. Seems like five minutes since my last MRI, but I'm back in for one today.

For the last two, due to pregnancy and then breastfeeding, I've had a convenient reason to avoid having contrast injected into my veins. No such luck today. That means a much longer scan and a cannula in my arm. Sigh. 

This scan is in the mobile unit parked at the entrance to the hospital. That feels weird. I've realised I take comfort in the familiar. I thought I knew the ward, where to sign in, the layout of the floor and both machines. I'm not quite sure how it could work in a wee little bus. So that's something new for me to fixate on.

Along with working out what to wear with no metal in it. No hair clips, no underwired bras, no jeans, no trainers with metal eyelets. Maybe pyjamas is the right way to go. 

That bloody toe ring as well.

Anyway. Wish me luck. 

October 2014

It's been two years now, since the surreal experience of being told I had a brain tumour. Last year I really succumbed to the memory of it. I spent ages explaining in detail to anyone that would listen, what happened when. I enjoyed prodding the scab of my still bruised psyche and in the process, pushed the patience of my closest ones to the limit.

I thought that it was a one year thing, and that I would then move on.

But here I am. Two years have passed and I'm still banging on. I can't stop thinking about it. I know exactly what I was doing at this time on this day two years ago. It's taking all my will power to not keep reminding people as each hour moves on. (Right now, we were in A&E and I was just about to go for the first scan. We didn't know yet. We didn't know.)

Today and tomorrow were dramatic. Although my day today is fairly mundane, in the background, I still feel low level adrenaline and anxiety. Poor naive us, sitting in A&E, oblivious.

I wonder if I'll ever move on.

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.

It's that time again.

My next MRI is tomorrow. I distinctly remember the anticlimax of last year, I even wrote about it. It was no big deal. So why am I so worried?

I've been doing a lot of running recently, and one of the best things about it is time to think. I've not had much time to myself since the baby was born and so it feels like a real luxury to just think for a while. Inevitably at this time of year I've been thinking a lot about head scans, brains and tumours.

I'm not sure if I ever asked, or if I've just forgotten, but I don't know how a tumour starts. Like, why does it begin?

When I was 12 I skied off a cliff. It wasn't intentional; I was trying to avoid a tree. Obviously with a bit of hindsight it wouldn't have been so bad crashing into a tree - no helicopters, splints or head scans would have been involved. On the plus side, I actually own copies of my 12 year old head scans which is pretty cool. And there is no tumour.

So where did it come from? When did it start? Why did it start? Why has this not occurred to me before?

Last week I managed to think my way through a 40 minute run, comparing my tumour to the entire universe (the world does revolve around me, doesn't it?). Either, I thought, it was created by God one day, or... there was an almighty big bang in my head (the cliff THE CLIFF), and then the tumour existed. (I admit, there are some failings to this comparison).

Oliver thinks it was a cell mutation, which makes sense. But even if that's the case, it doesn't really answer my question. Why? Why did it mutate? And why that one, and right then, in that way?

The thing is, I could have all the information in the world about how and why and what to expect, but until anything shows up on a scan it is all theoretical. None of it is worth wondering about even, it's such a waste of energy and worry - until there is a scan to look at. And tomorrow, there will be.

What is also not helping is the fact that I've had three migraines in the last five days. Not really recovering from one when the next hits. The last time this happened I was shovelled into an ambulance and ended up having my head sawn open. Bodes well.

Another thing I've been thinking about is the person doing the scan. They can see the results as it happens right, so they know, like straight away, if there's a whopping great lump of something in your head that isn't supposed to be there. What a weird job to know that about someone and send them merrily off home again to wait for a few weeks until they called in. I don't think I'm going to be able to stop myself staring at them on the way out, to see if they have pity in their eyes.

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.

Special delivery.

It was impossible to imagine having a baby. Not the act of giving birth (I spent a lot of energy trying not to imagine exactly that), but having another person living with us who we would be totally responsible for.

It was incredibly surreal as we approached the end of the pregnancy, especially given that we knew when it was all going to kick off. Everything became a countdown, but with no knowing what the other side would be like. I was excited, but just couldn't get my head around what it meant.

And now we're here, the other side. Alfred Morley was born on Friday 2nd August at 9:52am. He is brilliant. We've been home just over a week now, and although I am tired and tend to burst into tears twenty times a day for no reason, everything is going really well. He eats a lot and sleeps a lot and spends the rest of the time looking around in wonder with massive brown eyes. He is impossibly tiny, a tiny human.

What is strange is how normal it all feels. Except normal isn't really the right word. I don't think we have any concept of normal anymore as everything has been so weird for quite a while. It feels right though. Can't ask for more than that.

Alfred Colin Morley.

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.

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).

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.

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!

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...

How can I help?

Yesterday was extraordinary. Weird thing kept happening after weird thing, and many brilliant things happened as well. It was such a good day.

(Way up there was our new bin being delivered from John Lewis. It has a fancy lid that opens when you press it. This is very exciting.)

I am feeling really positive and lucky at the moment that I've started to look at ways to thank King's. When I was in hospital, particularly the first time, I was simply amazed (not in a good way) by the way people treat nurses and other members of hospital staff that aren't doctors. I can't imagine what they are expecting that would make them feel so let down, to behave in such a way.

Such aggressive language, I just don't understand why they thought it was ok to treat another person like that. And it wasn't just one person, it was everyone, even visitors. Just astounding.

At the time, I thought I would like to do something about it - but had no idea what. So I've been thinking and it's got me all worked up.

The first ward I stayed in was a short stay ward mainly for people that had been admitted through A&E. The people that I shared a bay with here were among the rudest, nastiest and ungrateful people that I have ever met. I was ashamed for them. I was ashamed of myself for just standing by and watching.

The second time I was admitted, was to a specialist ward for people recovering from some kind of neurosurgery - we'd all had either head or spine operations. Clearly the patients here had more to be thankful for, and they were as you would expect, less rude.

But that didn't stop them complaining and moaning. Run out of Weetabix? Don't serve WeightWatchers branded soup? Dear lord, call the BBC. Had to wait two hours before an ambulance was free to take you home? But you still got taken home! To your doorstep, by an ambulance - what are you complaining for? It really got to me.

Argh.

So I've had a pie in the sky idea: I want to do some research. I want to find out why people feel so frustrated and let down by the NHS. What do they think they are entitled to? I'm really interested to discover what they're expecting. Finding out where the perceived failings are will point out where to change the messaging, to manage expectations. Maybe just explaining how something works (ambulances aren't just hanging around waiting to take you home...) will make people less angry.

But research is expensive and I have no experience or background in it. Even if I did, I'm sure I wouldn't be allowed to go around just interviewing people. It would need to be centralised, and that would mean someone central caring about the NHS and it's reputation and future. Huh.

As a first step, I've applied to become a member of King's College Hospital Foundation Trust. We live so close to the hospital that it seems like such an opportunity to volunteer and bring some value to people. Hopefully I can at some point get involved at a deeper level and scope out the right people to put my idea to. It's a start anyway, I hope they accept me.