Wednesday, April 24, 2013

Scan results and a glimpse of the future.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Some good things.

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

Sunday, April 21, 2013

Reading and thinking.

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

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

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

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

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

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

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

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

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

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

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

Round and round again.

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

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

Anyway. The same dilemma. This is how it goes:
  1. First, I think, it would be useful to know some idea of precedent. In cases similar to mine (in terms of age, grade and location of tumour, pregnant...), what would they expect to happen? What is the likelihood of the tumour growing back? And where - in the same place? And when of course. And if it did, would it be likely to have gone up a grade? Or two?

  2. Then, I think, would it really change anything to know how likely all this would be? It doesn't actually tell me anything concrete. Which of course nobody can do. Thinking through the options - if they say it's 98% likely to come back, then how would that impact on the way I live my life? Well, I think I would ignore the whole thing between scans and deal with it when faced with the results. Much as now.

    And if they say it's only 2% likely to happen, then I'm still going to wonder... And when scan time comes around go through probably this exact exercise again. There isn't much difference between those two extremes, in fact, in the way I would live.

    In addition to this, I think it would be better to go through life believing it isn't going to come back and then getting an almighty shock if it does. But dealing with it at that point and moving on.

    That would be better than living life in permanent expectation of a returning tumour - in order to minimise the shock if and when it does happen - only to find that it doesn't. I'd have wasted all that time and energy preparing myself, and who knows what opportunities I'd have passed up for an expectation that never materialised.

    And it's not like I can't cope with the shock, I've already done it.

  3. The thing is, I'm used to looking at history to inform me of what to do. When I have a problem with a project at work, the first thing I look for is precedent. Has this happened before? Has anything similar happened? What was the solution, what worked or didn't work? This is all very useful information for creating a plan to move forward and resolve the problem.

    But here, there's no point having a plan as the precedent isn't actually relevant. In that it isn't directly applicable to me. It's just a possibility.

    So there isn't a plan, except to not have a plan. Unless the time comes when I need to make a plan, driven by scan results. OK, at this point, its decided. It wouldn't be useful at all to know likelihood of the tumour coming back. Job done.

  4. Except it would be interesting to know right? Maybe with some idea of what has happened before...?

  5. No, it wouldn't help. See above. End of. (Repeat).

  6. At this point I have a little break from thinking, due to fatigue / banging head against wall. Then never really get back to it. Today I managed to get a bit of clarity and take it a bit further.

  7. So I'm agreeing with myself, it wouldn't be useful to know statistics on likelihood of the tumour coming back, as only scan results can tell me what is actually happening.

    But what if the time comes when a scan does show some regrowth and I need a plan? What would the plan be? Here are some things I would like to know the answers to: how big would they let a tumour get before surgery? And would surgery be the only option?

    It's clear that surgery is my main fear right now, having to go through it all again - physically. But I'm sure in that situation it wouldn't take long for all the other fears to return.

    I think it would be useful to know now what the plan would be if that happened. And this is what I will ask about in the consultation. Also, what is the "detection plan" from now on - frequency of scans etc.

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

I might as well get used to waiting and seeing.

Saturday, April 20, 2013

Email out.

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

Thanks for signing up in the first place.

Tuesday, April 16, 2013

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?

Thursday, April 11, 2013

What it's like having an MRI.

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

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

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

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

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

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

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

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

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

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

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

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

Sleeping. Or, more accurately, not.

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

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

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

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

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

Ok, let's go.

  1. Lack of curtains. Easily fixed you might think, but requiring decisions. Difficult ones! We have a huge bay window with shutters on the bottom half. The curtain pole we inherited was never fixed on properly when we moved in, and finally gave up the ghost about a month ago, so we took it off completely.

    The question is though, blinds or curtains? Or both? The other question is, curtain pole or rail? And the other one is, fix the curtain pole (or rail) to the wooden frame or to the wall? And how much would it need to stick out in order to allow the curtains to fit over the shutters? And how to measure it properly, given the bends needed for the bay? Also - what colour curtains?

    I am paralysed by indecision. And awake.

    In other news, there's a street light ideally positioned just outside to shine directly in ones face at a certain point in the bed And if you move to avoid it, then it reflects in the wardrobe door - directly into ones face. Also, the sun has a habit of coming up each morning, and since British pretend summer time started recently I think that's probably going to get worse.

  2. The bloody cat. In an attempt to find out if Oliver is allergic to said cat, she is no longer allowed in the bedroom. Plus, sometimes she makes this horrendous smell, which I won't go into. Not impressed by this turn of events, she has taken to scratching the bedroom door repeatedly in the dead of night. She even adds dramatic pause for effect, then starts up again. She has amazing stamina actually.

  3. The radiators. Since the new boiler incident about two months ago, the radiators make a clicking, groaning, straining, hitting-self-with-spanner kind of noise every morning. It's really irritating. I'm always just waiting for the next click.

  4. Being pregnant. Weeing. Or specifically thinking I need to wee when I know that I actually don't need to. Also, not being able to sleep on my front (preferred sleeping position for over 30 years) or back (in case of aorta-squashing). This results in major paranoia about whether I'm harming unborn child in my sleep, by depriving it of blood whilst merrily dreaming away. Ha. And another thing - heartburn. Sigh.

  5. People breathing. And turning over. How dare they? Actually I'm adding this in for effect as Oliver is away this week so he really can't be held to account. I can't hear him breathing from Germany.

  6. The bin men. Rudely awakening me (I know - I've used this already, and it isn't Wednesday). We have single glazed sash windows, which are lovely but not very good at sound proofing. Despite initial concern when we moved in about the level of outside noise, mostly it's fine. If an argument does happen to take place just outside our window, I generally find it quite easy to drop off to sleep again (plus it's quite entertaining).

    The bin men on the other hand, Jeez Louise. Do you have to make such a song and dance about it? Will that bin lorry rev any louder? Can you make more of a crashing sound with each bin, getting closer and closer with each crash and shout... then sloooooowly, further away down the street? Maybe if you dropped the bins from a bit higher up you could get more volume going on the crash, but frankly I doubt it.

    And what - is every day bin day now?

  7. The car alarm. I'm not sure it is a car actually, maybe a building somewhere opposite, but it goes off with alarming (ha ha) frequency. Only at night. See previous post when just out of hospital.

  8. This blog post. Gah. I've been composing this all night in my head, which has inevitably been keeping me awake. It's now almost time to get up. The radiators have stopped clicking, the cat has given up scratching, the husband isn't here, the car alarm isn't screeching and the bin men are long gone. Even the street light has gone out - although it is broad daylight.

    Perhaps my time would be better spent getting a doze in instead of ranting on my iPhone.

Monday, April 08, 2013


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!

Thursday, April 04, 2013

Wherefore, whyfore, whateverfore.

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

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

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

Letter from the DVLA.

Timely, after I posted about this just yesterday.

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

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

Wednesday, April 03, 2013

Wherefore art thou, driving license?

I could really do with my driving license back now.

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

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

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

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

And I'm getting impatient!

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

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

Tuesday, April 02, 2013

Hello again. I think I've missed you.

It's been quite a while, and although I've thought about writing it hasn't really been a priority. But the last few weeks I've been thinking more and more and I reckon it's time to have another brain dump.

Things seem different now, there are thoughts and feelings that I would definitely have written about back in the day had they occurred to me, but it doesn't quite seem right now. I have rejoined society and am back at work. In some ways it would make me more comfortable if I could keep everything separate, in neat little silos. I guess that was the whole point though in the first place - to just be open about everything. Old habits die hard.

Anyway, here we are. It has been over five months now since my operation and I am coming up to the next set of scans and consultations. I should really have had them in February but they got pushed back. I think the speed at which I am approaching the MRI appointment has brought on this need to write again, it's always at the back of my mind and there's an uneasy feeling of unfinished business in the air.

Realistically the chances of the scan showing any regrowth is really, very small. It doesn't quite work telling myself that though, and I'm still feeling a bit apprehensive.

Besides this, I'm generally feeling ok. It's hard to believe that everything written here actually happened now. Equally it's hard to believe that I'm alright. I'm more than alright, things are great. Besides the constant tiredness and the short hair, I am pretty much back to how I was.

This is just a little reintroduction to writing again, and I hope to detangle my thoughts over the next few weeks with a few more posts about actual things. It definitely helped writing stuff down last time so I'm going to try that again. Oh - and my super talented uncle sent me some brilliant photos he'd managed to get from my MRI scan and I've put them on the photos page. Check out my eyeballs - I always said they were my best feature.