Sunday, August 07, 2016

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.









Thursday, June 30, 2016

Angry days.

I am a seething bag of fury at the moment. It has been steadily bubbling since Friday, when more than half of the people who bothered to vote in the EU referendum chose to make our country worse. It hasn't been my first taste of political frustration (erm, last May anyone?) but it has hit me much harder. I feel actual nausea, how did this happen?

And THEN, I found out that my application to work three days a week was rejected. Although not yet clear on the reasons, it has really made me angry. Angry because I am effectively being forced to choose between my career and my family. Angry on behalf of all womenkind.

Is it any wonder that there are so few female CEOs or senior management or directors? I have of course heard it all before, but somehow it didn't sink in. I guess it wasn't relevant to me, and I didn't think about the mechanics. Well, now it is.

I am furious because I'm not done working yet. Me and my parents and various previous employers have invested huge amounts in training me up to be a valuable asset. I could have the best qualifications in the world, but because of the lack of flexibility in the medium term (two years), I am looking at chucking it all in to work as a school secretary, or a waitress.

Not exactly the role model I wanted to be. So bloody predictable. And to top it off, we'll have to move out of London and live amongst the Leave voters.




Friday, June 17, 2016

The news.

It's been quite I while since I felt compelled to write. My voice feels increasingly irrelevant, and in the wake of yesterday's news continues to be, but I finally feel compelled again. 

Today, Rae turns one. I have just been up with her shushing and patting and feeding and squeezing and crying. And now it's 4:30am and I've come back to bed to write a blog post. 

Once upon a time I was obsessed with the news. All through my life I can date things I have done by events in the national and international press. I would scour my favourite news sites before I got out of bed every morning and any time I got a couple of minutes to spare throughout the day. I participated in lively discussions about current affairs. Not any more. 

I've always been emotional but since being ill and having children it's become ridiculous. I cry at everything, I've learnt to hide it quite effectively most of the time. Adverts get me, songs, my own mental thoughts, but worst of all, news stories. 

A few months ago now I stopped reading the news. I went cold turkey and at first I got loads of time back and revelled in my complete ignorance of what was going on in the world. I actively shunned conversations about the refugees, about economic cuts and our completely out of touch and cruel government. It felt comforting to not think about it, protected from the bad news. 

I feel guilty about it though. I don't like reading about, particularly the refugees, because I feel guilty, and unfairly lucky. It reminds me what we have, and the fact I have done nothing to deserve the good fortune of being born in the UK, to intelligent, kind and hard working parents. To have a family of my own, and a support network I can rely on. A house. Maternity leave. Two heart wrenching children. A life. 

I feel guilty for what I have in comparison, and I feel guilty for not having the emotional resilience to read about others or be able to help. So I have basically stuck my head in the sand. 

Social media is now my main pointer to world events, which is hardly a good indicator - my faith shattered after the Tory win in the general election last year (still hurts). 

Already emotional about Rae's impending first birthday, and my dreaded return to work, yesterday's shooting and stabbing of an mp has really got to me. Regardless of the political leanings of the victim, this is shocking news - have we really come to this? I can't quite get my head round it.

But then to hear about Jo Cox and the integrity and intelligence and kindness that she is, and the dignity of her husband in the wake of disaster, the fact she is northern, compassionate, an incredible role model for our children, a mother. I can't understand the unfairness, I am so upset. 

And once again I am given some perspective. There are more important things than poos on the kitchen floor and who last emptied the dishwasher. Today, Rae turns one. I want the best world possible for her to grow up in, people like Jo Cox to inspire her. 

I think it's time I started listening again. 








Wednesday, December 16, 2015

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.




Saturday, October 24, 2015

Happy 24th October!

Three years. The further we get from the day I had brain surgery the more ridiculous the whole episode sounds. I mean, brain surgery! As if.

This anniversary has almost snuck up on me, I'm definitely getting less hung up on the detailed analysis and memories of 2012, although I've been anticipating the actual day with a nervous excitement.

I like a birthday, and a spot of attention, so I've commandeered the day. We will drink champagne and celebrate being alive and, at the risk of sounding all nauseating and gratitudey, be really pleased that I don't have a brain tumour. Anymore. 

Things have really changed in three years and I have a huge amount to be grateful for. Tomorrow (later today in fact) I plan on enjoying myself, with some of my favourite people. Happy 24th October! 










Tuesday, September 29, 2015

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.








Wednesday, August 12, 2015

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? 









Monday, August 10, 2015

Bottle or breast? Yawn.

One thing that really irritates me is people getting narky with each other about how they feed their baby. I haven't ever written about this because it's dull, and there is so much out there that makes me cross, I'm not sure I can write about it without making other people cross. But I'm going to try.

I've had two babies now, and I still don't have the authority to advise anyone on parenting. It's a tough gig, everyone knows that, and there are loads of ways to do things. None of them are (is?) the right way for everyone. (Oh god, I've lost the power of grammar, and the patience to work it out. I am too tired).

I breast fed Alfred exclusively, for quite a while, and for the first seven weeks have breast fed Rae too. I come from a family of breast feeders and it seemed like the natural choice for me. That's what boobs are for, after all. And there are other reasons, like convenience and cost saving, but there are clearly some negatives too. Thing is, it was my choice. And it is nobody else's business (except maybe Oliver's). 

National breast feeding week has just finished and it sure does bring them out. I am all for normalising breastfeeding, I find it embarrassing and humiliating to get boobs out in public, and the more that becomes accepted as normal, the easier it would be. But what is with the shaming? Each side of the argument feel victimised by the other, as well as by the general public at large. What irritates me is groups heaping shame on the other side, whilst complaining about being shamed.

Anyway, moving on. 

As a breast feeder, I've not had much experience with bottle feeding, but yesterday I was forced to bottle feed for 24 hours after being injected with contrast for an MRI. Although I was wary she would refuse to feed and we'd be awake all night with a screaming baby, I was interested to see how bottle feeding went. These are the things I learnt. 
  1. I could totally get used to not always being the one doing the feeding!
  2. I'm not comfortable with anyone else doing the feeding, that's my job. She needs me for that, and I like her needing me.
  3. Sterilising. What a pain in the arse. Especially when you're inclined to drop freshly boiled things on the floor and have to start again.
  4. Formula is gross. Thick and sticky.
  5. Babies are not patient when you heat up their milk too much and have to cool it down again, and then re-sterilise the bottle having dropped it on the floor. And then start again because you used a normal germ-ridden non-sterilised glass to heat the milk in a sleep deprived haze, defeating the whole purpose of the goddamn sterilisation process. Waiting quietly and patiently, not so much. In the middle of the night? Funtimes.
  6. It's nice, not having to expose yourself all the time.
  7. It's nice, wearing proper clothes and supportive bras.
  8. Who knew how much milk babies eat? Wow, no wonder I have been hungry!
  9. Maybe I could get comfortable with someone else doing the feeding, in return for some sleep.
  10. In our short experiment, the rumour appeared to be true. She slept for EIGHT HOURS on formula. Hmmm, let me think about that... (This would have been wonderful had the two year old not had a total shitfit and shouted for five hours straight. Our neighbours love us). 

Conclusion: I can totally see why people would choose to do this. As expected, there are major benefits to bottle feeding. It was interesting to try it for the day, but I didn't really find anything out that I hadn't predicted.

The cost saving argument is a winner for me, and the convenience of not having to sterilise and heat and basically keep a hungry baby waiting. I like that boobs make the exact amount of milk the baby needs, and it is made especially for them. Also, I like that I can eat cake a lot. The exposure and sleep deprivation are worth it for that.

There are great arguments for both options, and so I will stick to my original opinion - whatever works for you. No judgements. YAWN.




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? 




Saturday, August 08, 2015

Scan day. Again.

It's snuck up on me this time. I've not really had the opportunity to think about it, which is possibly a good thing.

The logistics of leaving the house is complicated enough at the moment, but now I have to think about baby milk and bottles and sterilizing and how to heat up milk, on top. 

I had an emergency scan in April which was clear, but because I was pregnant I didn't have contrast. In fact, I have been pregnant or breastfeeding for so long that I haven't had contrast since the original diagnosis scan, nearly three years ago. I can't wriggle out of it this time. 

On the plus side, it'll be conclusive. On the down side, it'll take longer, I'll be punctured in the arm, it will make me feel sick and I can't breastfeed for 24 hours. That means my boobs will kill, and I'll have to "pump and dump" (seriously that's what they call it), and hope that the baby will feed from a bottle. 

It's going to be an interesting (hungry and cross) 24 hours, maybe I should take the opportunity to get pissed. Who's with me? 





Thursday, June 25, 2015

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. 





Tuesday, May 26, 2015

The good old days.

What good old days? The more I think about it, the more glad I am to be alive in this particular slice of time. Hair straighteners, washing machines, brain tumour finder sat nav thingies, wifi, YouTube, dry shampoo - life would be way worse without these (not an exhaustive list...).

Obviously it's not all good, as another five Tory years of depression looms, but I just had a little weep over how grateful I am to the dishwasher. 

Bloody pregnancy hormones. 



Thursday, May 07, 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





Wednesday, December 31, 2014

Onwards.

A while ago, it became apparent that we'd lost the charger for our good camera. Inertia kicked in and nothing happened for a while, but then Oliver bought a new one. Last night I went through the photos on the card and had a very timely overview of our 2014.

As a whole, it has been a great year. Alfred has grown from someone who could barely sit up to a fully functioning toddler, and it has been fascinating to watch. We've been away loads and had a brilliant time with friends - all captured on this card. 

But then there's a big black hole since September. No photos, on either camera. No positive memories at all. Just a whole elongated pain in the arse, which I am now going to list so that I have proof in years to come that it genuinely has been "a hard time".

  • Teeth
    Bloody teeth! Why aren't they just born with teeth? I used to roll my eyes and yawn when parents moaned about their kids getting teeth. "You chose to have a child, and it's a well known fact that children grow teeth. Deal with it". The reality is of course that I don't care about the actual teeth, I care about the sleep deprivation on top of a full time job. Two solid months of four hours sleep a night, simply isn't enough, when it's impossible to catch up during the day.
  • Burning bottom syndrome
    I don't know what this really is, but basically it seems that when our child is ill, his body rebels by expelling pure acid into his nappy every five minutes, which swiftly dissolves the skin on his bottom. Cue pain, upset, and more sleep deprivation.
  • Aeroplanes
    Put it this way: I am not stepping on another plane with Alfred until he is 16.
  • Broken electronics
    First it was Oliver's Macbook Pro, it proper just died. Then the iPad, with it's cracked screen. Then, of course, my Macbook Pro. The screen mysteriously cracked itself one day... I still haven't got it fixed due to the fear of having to remortgage to pay for it. But I probably should get it seen to.
  • Upstairs builders
    Our upstairs neighbour (who is lovely, you couldn't ask for a better neighbour) has unfortunately employed some cowboys to renovate her flat. They have taken ten weeks (so far) to do a three week job. They are incapable of speaking at normal volume and have taken up the floor, so I can pretty much hear them breathe - let alone drill and bang and thump around. Getting a child to sleep is tough enough at the best of times. Humph.
  • Leaks from upstairs builders
    We've had six leaks (and counting) of varying seriousness from the resulting chaos of the upstairs builders. Those are the ones we know about. The worst of these poured through the bedroom ceiling onto our bed, ruining our (incredibly expensive) mattress, the cover, topper, quilt, pillows and will to live, the week before Christmas.

    Insurance is a great thing, but they don't compensate for sleeping on the living room floor every night. And for the added sleep deprivation caused by both of us being up with the toddler during his 'refusal to sleep' period, as there isn't another room to use. And the fact that my dad couldn't come to stay for Christmas. This whole experience has made me very sad. I love our bed, it's my favourite place in the world and I hate that some idiot left a tap running and ruined it, just like that. 
  • Smoke alarms
    Another consequence of the leaky builders is that they short circuited the electrics running the smoke alarms in the whole building. There are four in total, and they all went off at different times during the same night, on various floors, in different flats. Oliver, (in my head dressed as a superhero, with earplugs) heroically located and smashed each of these as they went off, dodging buckets catching leaks, in pitch darkness, armed with a "big nail" apparently...
  • The crack head
    We were woken early one Sunday morning (one of the rare ones when Alfred was actually asleep) to a suicidal crack head on the door step in the throes of a panic attack, searching for Wesley. I added this in for comedy value, but it wasn't very funny at the time.
  • Hand foot and mouth
    In itself, not a very serious disease at all and nothing to do with cows. Alfred managed to get a secondary infection, a nasty rash all over his face and bottom and parts of his legs. He was uncomfortable, with a temperature, unable to eat and generally miserable - and awake - for about two weeks. Enough sleep deprivation already.
  • Ebola
    My mum is out in Guinea, helping with the Ebola efforts, which of course is very commendable - as long as she doesn't get Ebola. It hasn't helped my anxiety.
  • More teeth
    And then, out of the blue, I realised that we hadn't had any new teeth for a while. And so... yup here they come.
  • Broken car
    Poor faithful Fergus. He has something wrong with him. The day before Christmas, when we needed him most (the supermarket closed at 5pm and I'd of course left it until the last minute) he packed up. Just like that. What we really needed was an extra little something to make the logistics of Christmas less smooth.
  • Morning sickness
    Throughout all of this I felt like crap.

I've not been feeling the most positive about 2014, if I'm honest. Although lack of sleep seems to make everything just worse, so I put a lot of it down to that. Anything we own, of any value has been damaged. And I'm tired.

So it was really quite an eye opener to see months and months of fun on this memory card and realise that we've in fact had a great year overall, just a tough couple of months. It's almost the end of the year, and although it's an arbitrary line in the sand I'm looking forward to a new one and a chance to start afresh. 

Happy new year everyone, I hope 2015 treats us all kindly xx






Friday, October 10, 2014

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. 





Wednesday, October 01, 2014

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.




Sunday, June 29, 2014

Hi ho, hi ho. Sob.

I'm going back to work tomorrow, after almost a year on maternity leave. Before that I was pregnant whilst recovering from brain surgery. And before that I was off sick for multiple months. It's been an odd few years and work has not really been a priority.

I've been in denial for ages about it. It's not that I don't want to work it's just that I don't want to not be with Alfred. I will miss him, and I will miss out on him. I won't be the one that sees him develop and knows what he likes. It's selfish, but I like being that person. The one who knows him best.

I know he will be fine. Of course he will be fine. But I worry that he will think I have abandoned him, and I worry that he won't notice I'm not around any more. And I worry that nobody will care as much as me and I worry that I won't be in control anymore. And mostly I worry that I will hardly ever see him.

But my bag is packed,  my office appropriate clothes are washed and my lunch is ready in the fridge. There's no denying it now.

I don't want to go to bed as that means morning will come quicker.




Tuesday, June 24, 2014

A question of identity.

I've been thinking about this for ages, but without any real conclusions or a spare minute during the day, I haven't quite got to writing it down. I'm going to start now and see where it goes. Bear with me!

Before tumourgate, it's tempting to think that I used to be this set person, just waiting for my life to be turned upside down. And now that it's happened I'm somebody else. Someone who has been through it and changed and now I'm me. But in reality it wasn't like that. It wasn't as if my life was uneventful up until that moment. The things that happened in the previous life were just as massive to me then, because I didn't know that in comparison to what was coming, they were pretty insignificant.

Identity - by which I mean how I feel about myself - has always been a bit fluid. For a long time I felt as if nobody knew the real me, the one I kept hidden because surely if anyone did know they wouldn't like me. The worst insult growing up was always "nobody likes you". So simple. 

I suppose that how I identify myself is dependent on others around me. My sister is a brainbox, always has been (she's not so hot on remembering punchlines, though) and so I always felt quite stupid. Being the youngest probably didn't help with that. My handwriting was always messier. I couldn't run, draw, read as well as her. My hair was shorter, straighter, she had better clothes and more friends. I felt like the little sister who can never catch up - she'd always moved on whenever I got there.

When I got to A Levels I realised maybe I wasn't stupid as such - just not a natural academic. That was the first time I remember my actual self identity changing. But it's happened a lot of times since, when I think about it. 

Being older is way better. I'm one of those "everything gets better in your thirties" people, definitely not one of those "school is the best years of your life" people. Since being 30 I have enjoyed life much more and I believe that is in no small part down to being happier with myself and confident enough to let people really know me. I'm happier with my identity.



Telling people I've had a brain tumour is really strange. It has this kind of fizzly silence just after you've said it that people just stare at. A tumour is bad enough, but the brain element is what makes it mysterious. The black box of humanity. I read a great quote once: If our brains were simple enough to be understood, we wouldn't be smart enough to understand them. (Incognito by David Eagleman, it's brilliant). Brains are scary. A friend of my dad had a brain tumour when we were little and I was astounded that he was still alive. I thought it was definitely something you died from. 

It still doesn't really feel like I had that. I've never really identified as someone with a brain tumour. Maybe because it was over really fast, and maybe because as soon as it was over, the impending Alfred took all my focus. Or maybe it's just a reaction to extreme stress, my brain has rejected it. 

What is strange is that other people identify me by it. I'm the one that had the brain tumour. Any new people I meet now, it's a big thing to explain - when do I mention it...? And when I meet people who I already knew, I get the question. How are you? They're not asking how I am, they want to know about the brain tumour. Really though, how are you? 

And in that instant, I finally do identify as a brain tumourer. 

I am, technically, a mother. I have a baby, that I grew! And have fed and clothed and washed and carried around for nearly 11 months. He is my baby and I am his mother. But I don't really feel like one. I'm not old enough for starters. When we're together it's obvious that I'm a mother, but what about when he isn't there? Do people know I have had a baby? Do I even remember I've had a baby. Erm...



The question of identity had been brought more into my thoughts through motherhood than brain tumouring, but really the same principles apply. At first, when in the throes of shock, there are clear physical signs. When the signs have gone and you can choose which version of yourself you want to show the world, it is all about how you want to be judged.

I'm about to start work again after a long time off and some huge life changes. I don't know my new boss or anyone on my team. How are they going to see me? Who will they think I am based on what they know about me? And will that change my identity, and how I see myself? 








Tuesday, April 29, 2014

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.




Thursday, April 10, 2014

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.