Head Test

As it approaches the 7th month marker since rupture day I’d just like to thank all those who sent me well wishes for my recent MRI. I really appreciate all your kind thoughts and a big shout out goes to my Insta support network of fellow survivors who are all constantly cheerleading each other on. Many of you are asking how it all went well I’m afraid I don’t know yet as the results are not in. I do know however to not be afraid so don’t worry for me. How I look at it is I survived emergency brain surgery once so planned surgery will be a breeze right?! Plus if I do need a recoil I get to stay in Addenbrooke’s again and I’m not sure if it was the Oramorph but I quite liked it there!

As it was approaching the half anniversary of the day my dear aneurysm exploded I was awaiting that appointment letter. My mouth dropped when I saw that my MRI had been scheduled for 7.30am please arrive 15 minutes early. We live a huge two hours away from Addenbrooke’s so we had to prepare for an adventure. Fortunately the appointment landed in half-term so we decided to drag the boys out of bed and make a day of it. Jedi was excited at the prospect of getting up at 4am, the rest of us not so. We all got to bed early and I set my alarm for 4am only to see the list of preset alarms named ‘Nimotop’ which used to wake me up every 2 hours so I can take that evil sleep killer Nimodopine.

We arrived at hospital so early that they hadn’t even fired up the machinery so I was asked to fill in some forms and declare that I still wasn’t pregnant and sent to another department. This was before the clock change so the sun was coming up as we made our way over. I didn’t feel nervous at all. They asked me if I’d had an MRI before and I said apparently so. It’s only recently that I realised that I don’t really remember it.

I had various brain scans starting with a CT at the NNUH A&E. I remember vaguely being told I would need a MRI with contrast early on the Saturday morning after rupture day. I remember being injected and feeling like my veins were on fire and I remember hearing a voice inside the machinery what I don’t remember is the extreme lack of space! On this occasion the radiographer said to me as she wedged my head in, ‘you might want to close your eyes’ I soon realised why and I did. The machinary is air-conditioned so when you close your eyes your brain tricks you into thinking you are surrounded by open space but the rebel in me wanted to look, I did and soon closed them up again. For the life of me I can’t figure out how I can’t remember my first MRI because the second is something that I will not forget and if I do (which I can’t imagine happening) I’ll get a reminder in a year and then another in 5. The noise is insane as well as the general loud humming it sounds like an enormous photocopier. When I was brought out I felt a little disoriented and had a little glance at the screen so I could see what my brain looked like. I want to see the aneurysm really, I’m not sure if this is possible. If anyone knows if I can get copies and how that’d be great. I’d love to have them on my wall!

When we left it looked like day and we headed over to the car park. I’m still wowed by the fact that the hospital has multistorey carparking. Our own has surface parking and there are very few spaces. Wayne made a comment about the parking fee and I said that I thought it was a bargain price for an MRI.

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The Beautiful Steps of Sedgwick Museum

 

We took the boys to The Science Centre which we weren’t wowed so much by. It was tiny, crowded, noisy. The boys seemed to like it but we couldn’t really enjoy any of the activities because it was so busy. After lunch we went to the Sedgwick Museum of Earth Sciences instead of going back now this we were wowed by. Meow-Cat has a fascination with stones. He’s always collecting them, I’ve caught him squirreling them away in his pocket whilst he thinks we’re not looking. He calls them his gems so he loved looking at all the semi-precious stones and picking out his favourites. A volunteer showed them fossils and bones and they looked at the displays of ‘sea monsters’ and Jedi was pleased because he got to go to a ‘real museum’. Apparently dinosaur bones is the crucial defining factor to make a museum ‘real’.

If there’s one thing that I’ve learnt about being a parent is that absolutely anything can be an adventure. I can turn most things into a day out, hair cuts, dentist appointments and even MRIs. The boys talk about that day fondly. ‘Do you remember that day when you went to get your head tested mummy?’

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MRI EVE

I’m already dreading tomorrow’s 4am alarm, we need to be out of the house by 5.15am to embark on my last trip to Addenbrooke’s hospital of the year. It takes around 2 hours for us to get there and I have to admit I was a bit surprised to see that my MRI appointment had been scheduled for 7.30 am – please arrive 10 minutes before your appointment. Thankfully it’s landed in the half-term holiday so we’re just going to drag the boys out of bed and make a day of it. Jedi who is an early riser is quite excited about getting up extra early. I’m pretty confident that he is the only one excited by this notion. He’s also asked if he can have Burger King for lunch. The place where Wayne must have funded a full-time member of staff during my two-week stay. I said no.

Rupture day was now a little over six months ago. It now doesn’t feel real. It doesn’t feel like it actually happened. I don’t know if it’s a coping mechanism because I do remember returning home from hospital and living my life in a state of shock but as life has slowly settled down and the pre-rupture routines have fallen back into place, well the only way I can think of describing it is like I was watching it happen to someone else on television or reading a book.

Tomorrow’s MRI will check to see that the little platinum coils are still filling my aneurysm. Everyone who I’ve spoken to about this have said things like, ‘oh! You must be worried’. Of course I hope everything is as it should but I know I have nothing to worry about. If the coils have slipped further into the aneurysm, which there is a very small chance, all it means is having the procedure done a second time. I’ve figured that if I came out the other side of having it done under emergency surgery with a bleed around my brain then having planned surgery should be a breeze. I am in no way concerned about the result as I have every confidence in the man who fixed my brain and the amazing team of people responsible for my care back in April.

I only vaguely remember having an MRI before. I remember being injecting with something that made all my blood vessels burn. I have never been so aware of every single tiny vein and capillary in my body, I felt the fire rush right to my finger tips. That’s all I really remember about it, I was in a weird state of shock and calmness where I was just accepting everything that happened and everything that they needed to do. My main concern this time is that is the appointment letter states that I must NOT wear eye make-up. This is something that terrifies me especially as I had planned an old-time’s sake hospital selfie!

Guilty Mother

When I felt my body shutting down nearly six months ago it was responsibility that poured a bucket of cold water right over my face and brought me back. I am many things and I have several different lives which occasionally over lap and even clash but by far the most important life I live is the life of ‘Mummy’.

One of the main pressures of parenthood is expectation and guilt. Before Jedi was born I was determined to breastfeed exclusively for six months and he would NEVER have a dummy. Then Jedi turned out to be a horrible new-born. He was never very good at being a baby. My health visitor commented on how switched on he was, she said he’ll be happier when he can do stuff. He was born with his eyes wide open. I will always remember how dark his new-born eyes were and within a couple of weeks they turned a beautiful deep brown colour just like his daddy’s. Jedi’s birth weight plummeted as he we got into a vicious cycle where he was too hungry to sleep but too weak to feed. Reluctantly I topped his feeds up with ready made cartons of SMA and reached for the dummy and life settled down.

EXPECTATION

Breastfeeding is the most natural thing in the World

Nature has made a mother fully equipped to feed her baby

So anyone can do it… right?

Guilt

I couldn’t do it all by myself

The health visitor was right. Jedi wasn’t good at being a baby. He wasn’t all that great at being a toddler. He only began to fit into his skin as a school boy.

22 months after Jedi was born we threw him a baby brother. Chalk and cheese. Jedi always had a wonderful glow to his skin that certainly didn’t come from his chalky mother. Then came along my blue-eyed, blond rainbow in the form of Meow-Cat. Jedi was a tiny scrap of a new-born and post birth dropped to under 6lb. Meow-Cat was bigger and knew what he was doing. He was good at being a baby. He knew what to do, he fed well and slept better, his weight rocketed. Of course I promised myself no dummy. I think we got to 8 weeks.

It’s Jedi’s 7th birthday in a few days time. On his wish list, electronic kit, Lego Playstation games. Meow-Cat’s was just a few weeks ago, he wanted Playdoh and Frozen Lego. In fact he blew all this birthday money on Playdoh.

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It was yesterday I realised that we have bred two little best friends. Unbelievably different but they are so close. I had made their tea. Jedi wanted tuna and sweetcorn in his wrap and Meow-Cat ham, cheese and tomato ketchup. Where one lives for mayonnaise the other is a mini Pop Larkin and will eat tomato sauce with anything and everything.

Now Meow-Cat would be so cross for telling you this as I promised not to tell anyone and I feel like I’m betraying him a bit but it’s far too cute not to share but what struck me most was the kind of relationship that the two boys have developed is far more advanced that I could ever imagine.

I sat the two boys at the kitchen table, threw them a bag of skips and poured them lemonades and left to sit in the next room and have five minutes before my attention was demanded of again. I heard them chatting to each other. I’m going to change the little girl in question’s name to ‘Kitty-Cat’

‘… and then Kitty-Cat told me not to tell anyone that she’s my girlfriend!’

Well my ears pricked up! I always knew that Meow-Cat would be the first of the two boys to talk of girlfriends. Jedi prefers the company of boys, he is naturally boyish. I will never forget the four year-old Jedi who returned from nursery upset because no one would be his Princess Leia in the Star Wars game him and the other boys had orchestrated. Jedi’s life involves lightsaber battles, superheroes and blowing up stuff on Minecraft. He watches Dan TDM whilst Meow-Cat is absorbed by cake tutorials. Meow-Cat isn’t ‘boyish’ and even Jedi has commented that he’s not. Meow-Cat has never distinguished between ‘girls toys’ and ‘boys toys’ to him they are just toys. He likes the company of girls and boys alike and has a lovely mixed friendship group at school. He does however typically go along with what ever his big brother wants to do as he prefers having a playmate over playing alone.

I jumped up and demanded that they tell me what they were talking about. Meow-Cat’s eyes were boring into his brother opposite telling him not to say. Jedi just grinned. ‘Nothing’ he said. I kept pushing until Jedi said that Meow-Cat was telling him that he was glad they were brothers. I don’t know what struck me most. Was it that Meow-Cat put his trust into his brother? Was it the glimpse of the future, two brothers chatting about girls? Was it Jedi’s response, that he was prepared to hold Meow-Cat’s secret and then cover it up with a ‘lie’ that reinforced why he would keep the secret.

I’m a mum of boys, what mum of boys wouldn’t want to know about the rival woman in their son’s life?! Later I said to Jedi, ‘If you tell me what you were talking about I’ll read you two chapters of Oz tonight’ (We’re currently on book four) I could see visibly that Jedi’s conscience was being torn and Meow-Cat’s eyes bored into him again. I couldn’t do it. I felt guilt.

I don’t know if it’s the impending trip to Lego Land or the looming birthday but the boys were very excitable last night. There was a lot of playing, running and giggling. I tickled Jedi and he giggled more and Meow-Cat came running up ‘TICKLE ME! TICKLE ME!’ Why do children like being ticked? To me it’s the ultimate form of torture. So I told him I would tickle him if he told me what he said to Jedi and tea time. His head dropped. He really wanted to be ticked so he told me and then cried because he realised that he had told Kitty-Cat that he wouldn’t tell anyone. I hugged him tight and told me that she must be very special and he nodded. I told him that I wouldn’t tell anyone…

…and then I did.

Guilty as charged.

Another day another drug…

Last week I saw a third GP with regards to my headaches. It came as a bit of a shock when they offered me an appointment for the very next day so I snapped it up. I don’t care who I see anymore (apart from one who I would refuse to see under any circumstances). Recently I had been experiencing weird dizzy spells. At first I found it difficult to describe, it wasn’t the head rush kind of dizzy it was more like stepping of a rollercoaster or being drunk where the whole room seems to move and sway. The first time this happened I felt electric shocks run through my brain and fell backwards into a wall at work. I made a hasty retreat. Then a few days later my brain felt like it was vibrating in my skull and it felt like rather than sitting on the living room floor I was on a rather choppy ferry crossing. The brain shudders started to calm but I was still getting repeated experiences of dizziness. I thought I was going to fall off Meow-Cat’s bed one evening whilst I was reading to him. I assumed at first that it was a response to discontinuing Keppra and then as my headaches were getting worse and worse maybe it was that.

The GP said it was likely unrelated to the headaches and sounded like Vertigo. Great another thing to tick off the faulty head list. Whilst chatting I then realised that I don’t want to go back on Amitriptyline. I know! A few weeks ago I was desperate to take it but I’ve been feeling so unwell the thought of going back on it scared me as I know how horrible it will make me feel for a while and I really don’t want to feel any worse. Last time it made me so depressed I was 100% convinced I was ill again. Fortunately this side effect wore off after a couple of weeks but the ‘hungover’ feeling in the morning never did. If I took it too late at night I would feel horrible the next day. So he offered another drug to try. Pregabalin. A quick Google shows me that it’s not licensed to treat headache and migraine but often is with mixed results. It’s generally used to treat epilepsy and anxiety. So… a little like Keppra then.

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I started taking Pregabalin Tuesday evening. All was fine and then I woke up last night and thought I was going to be sick. I felt so so sick, it was like sea sickness. This morning I was clutching my stomach I felt so bad and I had Jedi and Meow-Cat’s Harvest Assembly to get through. School halls are not great place to be when you feel like you could be sick on your shoes at any moment. Fortunately I survived to tell the tale.

The good news is that after two and a half years of daily chronic headaches I have a GP who is going to refer me to a neurologist. I kind of feel FINALLY! My main concern was being expected to live my life with headaches forever, which another GP told was likely. No one should have to surely? He also told me to give me a call in a month to see how I’m getting on which I found quite refreshing. I’ve been on various medication constantly for over 4 years and I don’t want this anymore.

Time for a MRI

Six months ago I took Jedi and Meow-Cat to see the Batmobile at the Castle Mall. It was the school holidays and I always like to take them for a trip into Norwich for lunch and a wander around the shops or a trip to the local attractions. I sat and ate sushi in Chapelfield gardens with my brother and sister-in-law and then got on an over crowded bus to Fakenham where we met Wayne for dinner at The Hungry Horse. Our children love that place. My little family came to pick me up from work one evening and we asked what they wanted for dinner, ‘Hungry Horse!’ cue loading Google on our smart phones to track down a Hungry Horse in the area.

That day as we met superheroes, marvelled at the Batmobile and ate and played I was walking around with time bomb embedded in my brain. It literally could have gone off at any moment but life ticked on and I thankfully remained oblivious. Just a few days later after I had dropped the boys off at school it did indeed explode.

I have often wondered why it was detonated at that moment. My husband was away that weekend so ordinarily I would have been at work. Would it still have exploded had I gone into work? What if it had happened earlier when I was in the school playground or worse walking them into school. What would have happened to my six and four year old if there was no one around? What would they have done? What would have happened if my aneurysm had ruptured later when my guardian angel a.k.a. My sister-in-law and next-door neighbour had left for work? What if…. what if…?

As the half-anniversary of rupture day approaches I’ve been keeping a close eye on the letter box as I was informed that I would receive brain scans at six months, 18 months and five years. Usually the thump on the carpet has been junk mail and letters for previous tenants (despite us living her for a little over 3 years but at least the police have stopped calling) but today it arrived.

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My heart actually raced when I saw ‘Cambridge’ branded at the top of the envelope. I knew what it was. It sounds a cliché but I had all these flashes of my memories of Addenbrooke’s run through my brain like a slide show on speed. In just two and half weeks, the day before our eighth wedding anniversary I go back and have my brain scanned. This MRI scan will make sure that the platinum coils that were inserted into my aneurysm the day after it ruptured have stayed in place. There is the chance that they could slip further into the aneurysm which over time could cause it to weaken again and lead to another rupture. Should the MRI show that the coils have slipped then more will be added.

Time seemed to stop shortly after Batmobile day. The few days after that were quite normal and not memorable. The days after rupture day all rolled into one long expanse of time where there was no real night or day. I’ve held the six month brain scan as a marker of time. Back then it seemed a million miles away, just getting through the sleepless nights and remembering to take that stack of medication and painkillers was all I could focus on but it’s now nearly here and I’m sure the anniversary will be here before we know it. One of the reason why we selected to have it coiled rather than clipped was because I knew I’d get this scan. It’s a reassurance and privellege that not many people will get. For five years I will know if my brain is how it should be.

The trauma that is the common cold

Jedi and Meow-Cat have been back at school three weeks now and we’ve quickly slipped back in our old routine that was so abruptly shaken up back in April. Of course when your children return to school the chances of picking up a cold or nits increases by about two million percent. I am generally a warrior when it comes to colds, I received my training from my mum and Jedi and Meow-Cat are currently in training as I don’t want them to turn into the snivelling man-flu sufferer that is their father. We always know when Meow-Cat is coming down with something as he starts waking in the night and just cries uncontrollably but doesn’t really appear to be awake and there is nothing we can do to console him. He’s past this stage now and into stage 2 whereby he just casually sniffs and wipes snot right across his face.

A few years ago, shortly after I had Jedi I only had to hear, ‘So-and-so has a cold’ and I would pick it up. I remember one Winter I had a cold after cold with often just a few days in between. I was pulled up on it at work as my sick absence sky rocketed. If I didn’t have a cold then Jedi would and if he didn’t my mum who took care of him whilst I worked did. These weren’t any old colds they knocked us all out, they were vicious man-eating colds that would cause even the mightiest warrior to fall at. As I have mentioned before, pre-rupture my health had been better that it had been in a long time. I had energy again, it wasn’t quite so much of a struggle to face the day and I was happy, I rarely caught colds and when I did I would ignore them, shake them off because I didn’t have tiime for that nonscense. Well Meow-Cat has given me his cold. I knew I was coming down with something not because I woke in the night screaming but because I could feel it creeping up through my muscles and I started to feel unbelievably tired.

The tiredness that I am feeling right now is incredible, I can only compare it to the days of my recovery. I used to shake these right off and get on with it but do you know what? I really don’t want to get on with it. I want to curl up with a cup of tea and book and do nothing. Remember those days when I was desperate to get off the sofa and clean the house but in reality I couldn’t physically get showered and dressed until after midday and this was promptly followed by a nap. Well I want those days back, not for long just one or two days of watching ‘The Wright Stuff’ and ‘GPs Behind Closed Doors’ would suffice. I can’t do this as I have to create the most beautiful show stopping wedding cake that I have ever created and once I have those cakes covered and I have a paintbrush in hand I know that it will beat watching Channel 5 any day. There’s no pleasing some people!

Roddy Woomble and Band – The Open, Norwich

Just five weeks after my aneurysm exploded into my brain I found myself attending a Travis gig at the LCR, UEA Norwich (see All I Want To Do Is Rock). I had booked these tickets the minute that they were released and was excited to see the band that I had loved so much as a teenager. I had few concerns when I was in hospital, after all I had just survived a type of brain hemorrahage that kills around a third of it’s victims so I was just thankful to be alive but damned if I was going to miss this gig!

Live music sparks something inside of me, it’s like a drug. My oramorph! When we came away from this gig we were high and my husband said, let’s make a pact to see live music every four months. As a teenager I was often found at the LCR or Waterfront. When HMV was located along Gentlemen’s Walk I would always made a point of heading to the back of the store and checking out the list displayed behind this tucked away till bank. Here you could pick up flyers that looked like they had been less than professionally ran of a photocopier but promised a good few weeks or months of live music. You could also buy your tickets at this exclusive till bank and the tickets were beautiful, I have a stack of them somewhere and there was something quite special about them that the self print emails that you get nowadays lack. It makes me sound old but inside my brain I am the same 17 year old girl!

So my husband started the search. Who are we going to see next? Over the last few years we have been to various parts of the country to stalk the Eels, London, Birmingham, Brighton. But I have an affinity with the LCR plus we have our little Jedi and Meow-Cat to think about. As a teenager my heart was torn in two between Fran Healy of Travis and Roddy Woomble of Idlewild. I was in love with their lyrics and voices and thought them two of the most beautiful people in the world so when we found out that Roddy Woomble would be gracing one of our Norfolk venues it was literally music to my ears.

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Roddy Woomble performing at the Norwich Open 15th September 2016

 

I have a freaky memory for stuff and I am grateful that my Subarachnoid Hemorrhage hasn’t damaged this. I remember sitting in my friend Lucy’s living room, I spent a great deal of time here as a teen as it was close to the city centre and we were allowed to drink beer (I still can’t drink it to this day!). We were watching music channels and straight after Richard Ashcroft’s ‘Song for the lovers’ an Idlewild song came on. Now I can’t understand how I can remember Richard Ashcroft in such detail and not the Idlewild song that captivated me but I made a mental note to go and buy the album ‘100 Broken Windows’, their third album. I then went on to follow the band, they gigged in Norwich. The first one I was supposed to go to was cancelled and I kind of wished we had booked the ‘Badly Drawn Boy’ ones after all. I came home black and blue after seeing them at the Waterfront. My legs were bruised from being repeatedly pushed into the fence that separated the mosh pit from the band. Covered in the condensation that would drip from the ceiling and my hair would smell like cigarette smoke. It was brutal but I loved it. I saw them at a V festival and watched Roddy stumble across the stage and lose his shoe.

But then I grew up and actually being at the front of a mosh pit now seems terrifying! I have been dragged out of one before by a huge security guard when I fainted, they can be dangerous places. Sounding old again.

10 years ago Roddy Woomble went solo and released the album, ‘My Secret is my Silence’. My husband said that I wouldn’t like it as it was too folky for me. I bought it regardless and it didn’t matter than the music had a different sound because it was Roddy’s voice and lyrics that I loved. It also seemed a natural progression from the Idlewild albums which had also evolved over the years.

Last Thursday, exactly five months after rupture day, I stood with Wayne at The Open, Norwich with my obligatory plastic pint of cider (as I said before I can’t touch beer). Apart from visiting Reindeer there last Christmas and wandering through a craft market this was my first experience of The Open so I didn’t know what to expect. Last time we saw Roddy Woomble and band was about five years ago at The Arts Centre. An old church building where we sat at the front directly in front of Roddy with my tiny baby bump that was to become Meow-Cat (No plastic pints that night). Generally I dislike support bands but the band that was up before the main event were alright, I didn’t catch their name so I can’t point you in their direction. I’m not even sure that they mentioned their name. Roddy and his band then proceeded to play ‘My Secret is my Silence’ in order from start to finish and it was then I realised actually how much I love this album. Each time they moved on to the next track I heard Emmet, Lego Movie say, ‘I LOVE THIS SONG!’ I’m so used to sticking my iPod on shuffle whilst I work in my kitchen and it being one big mash up of Travis, Idlewild, Roddy Woomble, Eels, The Red Hot Chili Peppers etc. that there are no albums in my life anymore just my life in shuffle.

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2011 Tour screen print

 

Five years ago we were lucky enough to meet the band including Roddy and have a screen print signed which now hangs proudly on our kitchen wall. I had my eye on Roddy’s book, ‘Instrumentals’ to add to my collection of both books and music. The drummer kindly took the book to be signed for us, thank you! I haven’t had the chance to have a decent look at the book yet as I’ve been working but it really is beautiful with Roddy’s words there in black and white.

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Instrumentals by Roddy Woomble

 

I was completely captivated my the show, I must’ve looked a little like my Mini-Jedi when I took him to ‘The Force Awakens’ at Vue cinema during the last Christmas holidays! Absorbed and mesmerized. After the album had been played in full there was a half-hearted encore (I hate everything about encores, they’re so predictable but also necessary) and the band was back to play a bit more. Both the Arts Centre and The Open were perfect little venues for this kind of gig. It felt like you were in the middle of it all and that it was personal. I didn’t really want it to end and if I had died five months ago then I would have wanted My Heaven to have been just this.