The Surgeon

Shit! - she’s in the wrong car seat, I realised, looking back at Harriet consumed in Barnaby’s bright blue Toby chair - the seat belt loose, facing the wrong way, looking startled and ridiculously small.

It is Wednesday, October 3rd. I’m running late to meet with the Surgeon again, and my head doesn’t work.

As I grabbed Harriet and switched her to the other car seat, I closed the door and leaned my head against the door frame, taking a few seconds to regain my composure. In my moment of calm, I pictured my diary on the sofa back in the house with the list of questions that I had been scribbling down all week for today’s appointment.

"You should take a month or so to digest this". The surgeon had said in our last appointment as he stood up and stooped to shake our hands goodbye.

"This is not a trivial operation, not trivial at all. Look up everything I’ve told you. Take some time and prepare any questions that you might have."

I was sure that I had digested it all pretty quickly, and once again felt fully composed and resolute. But as I looked at Harriet in her oversized seat, and ran across the road to a friend who happened to be passing by at that moment to ask her to drop Barnaby’s pyjamas off at his nursery (without any explanation, thank you Sarah Carson) - clearly I wasn’t. It was just the one line he said that had cut through my composure like a knife, and would repeat like a bad curry every time I woke up to feed Harriet in the middle of the night, preventing me from returning to sleep.

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We first went to see the surgeon at the end of August, the day before our holiday to Cornwall. The original plan was to see him the day after our holiday, and that is the date that we had told our friends and family. But his secretary called us to say that he had returned from holiday that day and had seen the latest scans. He felt he needed to see us immediately and that he could juggle appointments. Were we available tomorrow?

Of course we were.

The night before the appointment, Alex was cooking dinner, whilst I took advantage of the down time to google the Surgeon.

“Al, We’re going to see ‘The Professor' (Barnaby's previous nick name at nursery) - Check out his CV". Amongst other things we learned that he’d written the Oxford text book on vascular aneurysms.

We continued with this up beat style of banter the next day when we arrived at the waiting room, on the third floor at Parkside hospital. I was a little high I guess, flitting towards the tea machine, shouting the choice back to Alex, acting like I owned the place because of my greater familiarity with the surroundings. I think I was perversely excited to be getting somewhere. Alex listened to chatter around us, noting people who had travelled a long way into London to see the Oxford text book author.

Then a giant of a man entered into the room, towering over the reception desk and grinning before turning towards the crowded room. Soon our eyes locked, before he said to the only mother in the room with a baby in a car seat (the right one this time):

"Sophie Orme? Step this way"

I walked ahead whilst Alex followed with Harriet.

"I think my father knows you" I said to the giant walking in front. He turned gently, tipping his head down.

"Oh yes?"

“Dr Evans, I said, Dr CC, 'MDU’".

A smile tugged at his lips, I could tell he was storing up those details to look up later.

"Small world" he said. And I have no idea how that sat with him - if a bit of pressure had ratcheted up in his professional mind or not.

It was quite a large room, and he reclined in a huge high backed leather arm chair, pushing back from his desk and folding his legs, hands clasped behind his neck.

"So what do you know about your aneurysm?" he asked me.

My Dad would later laugh as I relayed his opening question.

"About as much as you, Professor", Dad had imitated.

Thankfully I didn’t quite say that, though my monologue met with a lot of nods of agreement, even when I exaggerated my understanding of the size.

I liked that he had opened with this question, I had 8 months of research under my belt and I thought I did understand every scenario. But in the next few minutes I made a new discovery which perhaps others can relate to: No matter what research you do independently on google or otherwise, no matter what pre conversations you might have had – you cannot possibly prepare for the gravity of that first face to face conversation with your surgeon – the guy whose hands you are putting yourself into. Whatever stats you have read, you can always tell yourself that you’ve probably got it wrong, that you’re choosing to dwell on the worst case scenario, you haven’t got the context right, and that medicine has probably moved on such a long way since that report.

He gave us some numbers. The first probability was for stroke, also referred to as ‘morbidity rate’ and it was quite a good number really – it was low in my mind, indeed lower than most of the reports – but an integer all the same and delivered with an incredible air of serious-ness. It didn’t however disturb my flow of questioning.

"And what about the risk of the nerve damage", I asked. "The neurologist mentioned the risk of losing my speech?"

"Yes, that’s the highest risk with this operation" and he inferred particularly in my case because of where the aneurysm is sitting and the size of it.

"There is a danger that you will lose your speech and your ability to swallow."

He gave a percentage probability, and he caught me by surprise.

The dialogue continued, but I tuned out. I recall that my voice had wobbled on the next question in the way it wobbles at in-opportune moments at work when I feel under fire. This time the wobble gave my inner fear and surprise away. I ploughed on not knowing what else to do, and tried to get my voice to iron out, pushing the clammy palms of my hands into my thighs, willing my normal – I’m not about to burst out crying voice to return, which finally it did.

Through the fog of my memory, we had moved to his computer screen where he’d highlighted what was going on. It was the same 3D image that I had sent my Uncle and Dad to get opinions from their network, only it was highlighted in a different way, and seemed larger, and more ‘interesting’ – the word the Professor kept using. Sitting in front of his screen I was transported back to the early eighties and my parent’s dining room in Liverpool, aged 6:

The central heating is dialled to an impossibly high setting, the lights are dimmed, dust particles jostle for position in front of the projector light, heating up the room still further. A slide carousel rotates around, as each awful medical image clicks on to the next, up and down and around. The slides are projected two thirds onto the ivory patterned wall paper and a third onto a framed print of Liverpool hung on the wall to the right of centre. Dad’s slides show anonymous sets of clogged up lungs, but it is mum’s dermatological images that would etch into my mind. They were quite grotesque. If dad caught me gazing at them, I'd be challenged to identify the problem.

My parents never asked us why we didn't follow them into medicine!

Back to the Professor's computer screen, and my 6 year old self would have had no trouble identifying the obvious deformity and could have guessed at the consequences simply by glancing at it. Only this image wasn’t anonymous. I could clearly make my name out in the top right corner.

"Your aneurysm will certainly be well published when we’ve got it out".

Well there's always that, I had thought.

After an awkward moment of silence, with Harriet looking up at me. I asked the question that was really on my mind - the elephant in the room:

"Might that be permanent?", I asked: "The swallowing, the voice?"

“Yes, it might” he had replied.

A pause.

We moved onto timings, and no – the Professor didn’t want to wait until next year. He explained that he would always advise treating a giant aneurysm greater than 2cm diameter. Mine was now sized at 3.5, and the less invasive and lower risk treatments were not available to me. We should get it done before Christmas he told us. He had performed 8 similar operations before and expected maybe 2 more in his career. Another Surgeon would be doing similar numbers in central London, and that was about it in England.

"Have you got any questions?" I turned to Alex.

And he’d gone quite white.

Apart from the timing he hadn’t really got any questions. He had come straight from work, for him there hadn’t been endless search strings in google, and diaries to write in. He was fully in listening and absorption mode, and even 6 foot 3 of him seemed dwarfed by the surgeon that day.


And that’s when the Professor had suggested the next steps: the month to digest, the question gathering. And no I shouldn’t go surfing, and I should use my common sense – "don’t do exercise that pushes your heart rate up!". And with that instruction I wished that we had waited until after our Cornwall holiday to see the giant in an oversized suit with his swinging red tie. As I shook his hand, thanking him again for his time, I swallowed the sticky nothingness in the back of my throat, contemplating for the first time what it actually takes to do that – to swallow, and what your world looks like if you can’t do that on your own.

“Let’s not pick up Barnaby just yet” I said as we got into the car.

"You ok?", we both asked back and too, and we both agreed we were.

“I liked him", I said. "Straight talker”.

“Me too” Alex replied.

When we got home, Alex bathed Harriet and returned her to me. He sat on the other couch and we talked about the practicalities, the timings, how we might manage the month or so that the surgeon suggested I needed to not be a mum for post op. We didn't talk about the swallowing, the negative possibilities. Looking back I don't think we could - not out loud. As I sat there breast feeding, Alex left to pick up Barnaby who was at his best friend Famke’s house, he opened the door to leave and remarked:

“We’re lucky you know, the people next to us had travelled up from Bournemouth".

And as the door closed behind him, I wondered if they would have their problem published one day too.

I had bedded Harriet down and called my dad to relay most of the appointment, for the first time holding some details back from him. I sat in our front room alone. It felt strange to be a mum of 2 children, nearly forty. I just felt like a little girl, a daughter with a nasty injury who wanted her mum and dad. Who wanted that simplicity.

Seconds later, the peace was shattered as a despairing Barnaby returned, still screaming as large droplets of blood from his chin leaked onto the floor and had splattered all over Alex’s shirt. Alex had been chatting to Famke’s mum about the appointment, distracted whilst Barnaby took a big crash in his girlfriend’s bath, gashing his chin, which possibly needed stitches. It would fully absorb our attention for the next hour or so until Barnaby snivelled himself to sleep with his dad close by. I was a mum first and foremost again, and I had held him tight, reassuring him that it would be fine in the morning and we would be off on holiday soon enough.

Soon we had begun the long journey to our new home in Cornwall where we would host the majority of our 2 families and throw a pretty funny Cornish housewarming. The sound, smell and taste of the elements would once again heal us after the shock of the appointment. The rogue theatre production set in the wild Tehidy woods [pictured] would send minds to far happier, wondrous places.

Before that magical evening had captivated us all, I had slept quite badly, and there were times when I wanted to share my night time conversations in my head with Alex, but each time I stopped myself, fearing I would de-bounce him like Winnie the Pooh's tigger. I feared that the wheels might fall off our little unit, if I pulled that pillar of positivity down with me. Anyway, I soon bounced back myself - I don't know if it was the morning spent blackberry picking with Barnaby around the back of the house, the sound of cousins running up and down the stairs playing hide and seek in cupboards and cubby holes. Or maybe it was when I seized on Alex's suggestion that surfing would more likely lower my blood pressure than drive it up: I quickly found peace in my head when I returned to the noise and salty bustle of the Atlantic Ocean that I so love and makes me feel so brilliantly alive.

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Returning to Parkside in October felt quite hard with what had gone before. Once again the Professor was prompt, leaving us no time to compose or even get to the water fountain to wet dry throats. We both had questions this time and we ran through them one by one. Alex asked a question about how they would remove a plastic tube used as a bypass whilst they set about cutting out the aneurysm.

"Honestly", our straight talking surgeon had said, "that concern doesn’t even make page 3 of my list of things to worry about in the operation".

I drew a mental line through most of my remaining questions after that.

Apart from that comment he seemed to downgrade the more serious risks, and when I returned to the swallowing and the voice, he was much more upbeat about the probability that potential damage would be recoverable in time and this was quite a relief to hear. He seemed genuinely quite surprised when we insisted that – yes – we still wanted to go ahead, and it transpired that no progress had been made at his end in planning a date. He promised to get back to us within 10 days, but it would take over 5 weeks for a date to be returned, hopefully the only downside of having a world renowned surgical team assigned.

We returned home again to the same routine, this time slightly agitated by the goal posts shifting on the timing. With Alex off to pick up Barnaby from another bath in another Putney street with another girlfriend, I sat and gazed into Harriet’s eyes as I breast fed her. With the overhead light glinting in her iris, I could swear that I could make out shards of hazel, slowly turning her eyes from blue to brown, and I returned her smile as she pulled away from my nipple to look back up at me.

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I’m due to have the operation on Thursday 12th December at St Georges, and we’re very relieved to have a plan in place, despite non ideal timing ahead of Christmas & events that I'll now miss like Barnaby's first nativity, my brother's 40th etc. I'm also aware of the ripple effect for family members who will also need to sacrifice events too. We’re feeling positive, upbeat and I’m looking forward to returning to Cornwall for some more healing post op if everything goes well. Alex will take time off work and look after the kids for a few weeks, and we’re grateful for all the offers of support to that end. I still feel very lucky and blessed that I get to have this sorted out in a non-emergency situation by the best surgical team available, and that I have a wonderful family and friends to support.

I only now realise the responsibility I have in writing this blog, with > 5000 hits in the last few months just from a link on my facebook profile. There is of course the risk that this is a live blog, and I don't know how this story will unfold either.

Poor Alex - I have never sought his permission, and he must never have anticipated that I would share this level of detail of intimate thoughts and feelings. Nor did my wider family (sorry). Although Alex fully acknowledged during his wedding speech, that his wife could be a 'little too honest' at times. So sorry to him for broadcasting our story to the web, and thank you to him for not holding me back in what has been a cathartic process for me in writing so far. Actually, I find it far easier than talking about it. Alex you are my rock, my anchor, a beacon of positive light, and a quite wonderful dad to our adorable children. It is 8 years on from our vows and I love you terribly.

Thank you also to Harriet for your long lunch time sleep just now, for getting into a fit of giggles last night when Barnaby was wiggling his bottom at you, for presenting your legs up each time I change your nappy or put tights on you, rarely crying, sleeping well, making the transition from breast to bottle pretty easy, and enchanting everyone with your smiles. You make me look good as a mother, and it is mostly undeserved. Barnaby - thank you for just getting the sliding scale right on your ratio of loveliness to naughtiness and being a gentle, loving and amusing big brother to H and somehow empathetic to me when I have a sore head, despite just being a toddler.

I intend to pick up this blog post op, God help us when I learn how to tweet.

Thank you for reading.

Shit Happens...in-it

I remember when it was just Barnaby and I, the first few months had been marked out with all ‘the firsts’. Not the first smile, but the first bloody difficult unaided task – like fitting the car seat in with a screaming baby, or going swimming, or taking on the endless steps at the train station with the pram. I would tend to dread the challenge ahead of time, and then it would either go swimmingly well, or so spectacularly badly that any future recurrence would seem relatively easy. Second and third times would be child’s play, relatively.

Now there were two of them, the first 'first' that stands out in my mind was bath and bedtime with Alex away.

Barnaby seemed to recognise my sense of challenge when we returned home from nursery. In fact for once he was looking forward to it, and rather than a battle to get his clothes off, he whipped them all off in seconds unprompted in a determined effort to get in the bath first before a naked leg kicking Harriet followed.

It must have been a Wednesday, because the white tiled floor in the bathroom was exactly that, a tell tail sign that our cleaner had been, and our lovely Missoni bath mat, bought as a wedding present, had just been washed and was drying over the bath. With one arm clasping Harriet in the nook of my elbow, and Barnaby ahead of me, I pulled at the bathmat and dropped it on the floor, straightening it with my foot. It was at the point when the eruption happened.

Shit happened actually. Quite literally.

I don’t know if it was the sound, smell or touch that caught my attention first, but I quickly worked out that the machine gun mustard fire was coming from Harriet, and the bathroom and my body were very much in the line of fire. Instinctively, I straightened out my arms and held her away from me, inadvertently putting Barnaby in jeopardy below. Within seconds, pellets of bright yellow pooh treacled down his blond sun bleached hair, spraying his arm, tummy and leg, and splattering his face just below his eye. For a moment I was frozen to the spot, as if waiting for the firework display to come to an end.

When all was still, there was a split second where I tried to work out what to do first. Reaching for some toilet roll with my right hand I had to decide whether to clean the slippery bathroom floor and mat; myself; Harriet, or Barnaby first. In the end, my self-preservation instinct triumphed over my maternal one, as I cleaned myself up first, then moving swiftly onto Harriet’s bottom so that I could place her on her blue deck chair in the bath water. Finally I turned to Barnaby who was still obediently frozen is some kind of ‘urghhhh’ shock, his eyes fortunately glued to the mess on his tummy and leg, seemingly unaware that his left ear hole was completely filled with yellow liquid, nor did he have a clue that yellow splatter marked his face and hair alike. I wiped the areas he could see and got him into the bath opposite the perpetrator. Sitting there he looked at me, and back at Harriet and together we burst out laughing.

“Harriet’s pooed all over us mummy, and it’s sooo yucky!”

It’s pretty funny isn’t it” I replied, at the same time taking the flannel to his face, and reaching for the orange plastic tea set to pour water over the sheen of pooh on his hair and in his ear.

“It’s not hair wash night mummy. Stopppp!”

“That’s funny too, isn’t it” I replied – now shaking his mucky hair with my hand to try my best to get it out, but stopping shy of provoking a battle with the shampoo. Harriet is beaming back at Barnaby from the other side of our rather tiny bath, delighted by the release.

And I wondered then if Kate Middleton had been splattered with mustard coloured pooh yet.

The one NCT class that I have always remembered is the one where Cathy recounted an anecdote with the vivid lesson that you should never leave a baby in the bath alone, whatever cradle or deck chair you have them in. With thanks to her near miss story, it’s one of the few rules I have not broken, together with the Madeleine rule that Crime Watch reminded me of last week.

Scooping Harriet in her white eared towel, I decide that Barnaby however was now big and confident enough for the rule to no longer apply to him. But his desire for constant social interaction led me to return to our cramped chaotic bathroom with Harriet. I closed the toilet lid, crossed my legs and began breast feeding her. Splash and Barnaby’s incessant chatter bounced off the walls and led to a pretty unsuccessful last feed, and of course a win for Barnaby in his attempt to get Harriet to smile at him, whilst she should be concentrating on feeding. This staging would not be repeated in future, but nevertheless, by 7.15, a near record in our household – the two were in bed content and more importantly quiet. I trundled downstairs to discover we had run out Gin and Tonic. I’d be more prepared and at ease on both counts the next time.

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In September we reduced Barnaby’s nursery hours to 3 days per week. It was something that I always felt we should do, and I’d felt guilty that I hadn’t done it sooner. I know countless mothers (not least my sister) who seem to breeze through summer holidays and those times where you have your 2+, 3+ kids around your feet, and entertaining them appears effortless to an outsider. Not for me though, or so I had forecast on the day before the honeymoon period ended, when it had just been me and Harriet. And I guess a sense of fear had dawned on me on that car journey home from our blissful holiday in Cornwall. It was the fear of entertaining my toddler full time for 2 extra days per week, when he’d been used to a full time diet of structured stimulation at nursery. Harriet and I were on the precipice of peace, simplicity and relaxation and I knew that the other side would be filled with noise, classes, Harriet neglect, and that killer comment from Barnaby:

“Mummy, I’m bored, where are all my friends?”

Along with the prospect of interrupting my relatively easy rhythm with Harriet, was the deep seated fear that I might not cut it with Barnaby as a mum, or Alex as a wife, when he would come home to find a messy house and no food prepared. My brain especially would be out of its comfort zone - addicted to a manic working environment pre maternity leave – jumping from dealing with my
Outlook inbox, to crisis phone calls from my team out in the field, to preparing to deliver a presentation to a large audience, laptop and iPhone hovering under my finger tips, blurting out noises to signal an update or overdue meeting. Switching my iPhone to silent mode and truly putting it down in order to spend hours of concentrated playing, and tuning my mind to toddler chatter for 13 hours per day is one of the most challenging things I’ve had to do in my thirties. I didn’t anticipate then, that I would have an infinite urge to correct his speech, which I would blame equally on the irregular verbs that clutter the English language and on Barnaby’s key workers at nursery – most of whom seem to stem from Croydon and have pretty useless English - slightly aggravating given the extortionate fees they charge, init!

“Today we was playing a lot in the garden, wasn’t we Barnaby, and we done some writing practise”.

ALMOST £90 A DAY FOR THAT SUMMARY, THANK YOU PUTNEY!”

Anyway, I digress. So it was the car journey home from Cornwall, devoid of a plan of structured entertainment for Barnaby for the next day, coupled with a desire to make the most out of London before we say goodbye to it - when I came up with the ambitious and stress busting plan to arrange a trip to the Horniman museum in South East London for our first Monday together in the new regime.

Tomorrow I’ll pen the story of that ill-fated trip and I’ll keep The Surgeon story buried for another week, as Harriet and I have only just returned to a decent sleep pattern at night (hence blog gap), and so not ready to evocatively re-open that wound just yet.

C Section and the happiest moment

We arrived at Kingston Maternity Wing at 10 am on Monday 10th June with no contractions and no stress.

I felt a bit like an imposter, walking unaided to the reception desk, not stooping over clutching my back, not in agony, not wondering how long labour would last. I carried my overnight bag over my shoulder laden down with that day's newspaper, a fat copy of Vanity Fair magazine, as well as the essentials for a 3 day stay in hospital. It would be a completely different experience to the 5 day ordeal of natural labour to introduce Barnaby to the world.

Just 35 minutes before the delivery, I had entered theatre with my iphone glued to my right ear as I took our first booking for our yet to be completed Cornwall house. I relayed the pre-booking to Alex excitedly, as I bent on my side in a foetal position on the bed, whilst a huge giant of a man called Jack inserted a needle into my back to deliver the epidural. And not for the first time I wondered why I hadn't opted for this magic numbing liquid the first time round.

The worst bit of the whole procedure was just inserting the catheter into the top of my hand. I remembered it really hurt with Barnaby, but I had so many other pain triggers and exhaustion to contend with, that it got lost in the mire. For those who haven’t and will never have a Caesarean Section, it is very hard to describe the feeling and sensation other than to assure that it doesn’t hurt and it’s incredibly quick.

Dressed in blue scrubs, Alex was at my head end (of course), together with the anaesthetist and his junior, and 3 others whose role I couldn’t confirm. I looked above to the ceiling and in front to a blue curtain which hung above me and dropped down to just below my chest, leaving me with my breasts which I cupped with my hands, not sure of what else to do except to flex my hand which was still irritated by the catheter. If that’s the worst pain, then this is a synch, I thought.

For the first 15 to 20 mins after the epidural, the anaesthetist had sprayed my body from my feet to my chest with an icy compound to check the function of the drug. On my left hand side, I could tell the epidural was working well, but on the right hand side, the numbness stopped mid-way up my body. Like with all medical procedures, I started to doubt myself as to which was the right answer when asked.

"What do you feel? What do you feel now?"

“Air, cold liquid, nothing” were my answers.

The Consultant Obstetrician arrived just 5 minutes before delivery and left shortly after, to cross the corridor to the other operating theatre where they were tag teaming deliveries that morning to catch up on their schedule.

Everyone involved in the procedure had read my notes, and so the small talk of choice was:

“so what’s going to be done about the aneurysm?"

At least it gave me an identity, I had reflected, in this ‘one born every minute’ maternity ward conveyor belt. The other question was of course

“Do you know if it's a boy or girl?"

To which I had replied “not really, but we’re both convinced it is going to be another boy”.

Only Barnaby would be proved right.

There was no sense of pain as the Doctor and midwives prepared to pull out our second born. I could sense a fair amount of ‘shoving’ going on, which climaxed with the sensation that all of my internal organs seemed to be shoved up towards my breasts which I was still clinging onto. Just as I was beginning to get concerned with this crescendo of activity, I heard a baby’s cry, and saw a tiny bundle covered in white gunge, held aloft the blue curtain.

"Do you want to see what you've got" the mid wife said.

The next words were from Alex:

"It's a girl!" he exclaimed, and a huge smile lit up both our faces.

It was a complete shock, and I think this was the happiest moment that I have ever felt. And the sense of wonder and joy, that had been absent during my second pregnancy, instantly came coursing back, like a shot of adrenaline into my heart.

Of course the day we got married, and the birth of Barnaby, were extremely happy occasions: but the wedding was spread over a period of a day, and when Barnaby was born, as happy as I was when he latched onto me, I was quite delirious with exhaustion and pain. Whereas, when Harriet arrived, just 35 minutes after entering the operating theatre, I couldn’t have been more lucid, more shocked that it was a little girl, and more appreciative that she appeared so perfectly well, after the assault course of MRI’s that she had joined me for.

The night before, Barnaby had gone for a sleep- over at his best friend’s house, and as my head had hit the pillow at our home in Putney, I had looked up next to Alex and said

“A healthy girl with brown eyes please”.

Her eyes were blue at birth, but no matter, like the rest of her tiny features they were gorgeous, her cry already seldom and I felt an instant protective bond. I couldn’t have felt more blessed, and a summer of great sport, sunshine and family happiness would follow.

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I write this blog from the same buzzing café in Putney that I wrote my blog for 5 continuous days in the hormone laden week preceeding Harriet’s birth. Today, Harriet sleeps beside me in her slightly tatty blue Bugaboo pram, satiated from a good slurp of milk post 16 week vaccination at the clinic opposite, fuss free as usual.

I reflect that I feel completely relaxed on each day when it is just Harriet and I. Maternity leave on these days truely feels like a holiday and her mellow nature is contagious. My heart is full with the sense that we have been blessed with our hilarious, demanding and happy Barnaby, and his smiling, placid sister. But all the while in the background I have the thought of saying goodbye to my family ahead of the impending operation that I need. By the time I get the aneurysm dealt with, it will likely be fully 12 months since it was first accurately diagnosed and I became aware of a 3cm diameter time bomb in my neck. I long to get it over with, and return to this café to describe the moment of emotional relief when I wake up from the operation and realise the surgery had gone to plan. I pray for that moment and hope that it will come soon. In the intervening days, weeks and months, I will continue to bury thoughts of the alternative scenarios in a pocket deep in my mind.

“The Surgeon” up next, when Harriet’s lunch time sleep, and a day at nursery for Barnaby next permits.

Diagnosis Confirmed and Perspective

It was 2 long days before returning to Parkside to get the verdict from the Neurologist. Dad had called me back from his ski holiday where I had located him the week before, enjoying a round of Vin Chaud in Les Gets in the Alps when I had called. Mum and Dad were enjoying their ‘silver ski’ holiday package including guiding, excellent food, and pristine conditions that morning.

“Your mother is skiing marvellously” Dad had said. “Just like her old self”.

Thank goodness for that I thought, as I imagined that her surgeon would have been quite non-plussed if she’d jarred her knee replacement skiing carelessly over moguls. I had emailed Dad the scanned report from Dr Clifton, and it turns out that their group is made up of other retried medics, and of course a pre-eminent vascular surgeon is also in the party and he would confer with Dad pre dinner.

So when Dad called me back post Cornwall, it was not just his opinion, but the collective view of the ski party that he was returning.

“We’re all confident the MRI will confirm a body tumour - It won’t be an aneurysm – that’s too unlikely for a woman of your age.”

“Oh”, I said, “but Dr Clifton seems to lean towards an aneurysm?”

“No not at all” Dad had said. “Read the phrase again - the report is simply saying that he cannot exclude an anuerysm. That doesn’t mean it is, he’s just covering himself. A body tumour is still far more likely.”

“Ok, well, let’s see” I replied. Not wholly convinced.

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Thursday 7th February finally comes around; it is Alex’s birthday and the date of our deferred appointment with Dr Al Memar.
As we sit down, the charming Egyptian Hercule Poirot has returned:

“Mr Orme, I am pleased to share with you that your wife has a very large and beautiful brain, look at the image on this scan”.

I am put slightly more at ease by his positive opening tone, but essentially my fear boils down to two worse case scenarios:

(a) The MRI is inconclusive and the Neuro team determine that they cannot wait to do an angiogram to conclude, or

(b) An aneurysm is confirmed and the risk is such that they need to operate urgently.

If either of those scenarios plays out, I cannot see a good outcome for my 22 week bump. I’ve resolved that I can deal with anything else.

“Has the MRI confirmed what it is?” I ask

“Yes” He replied. The MRI shows that it is….

And in the same way that when I’m sitting in the main stand at Anfield, I chant ‘LIVERPOOL, LIVERPOOL over and over in my head at the exact same time that the away fans begin chanting ‘and it’s Arsernallll, Arsenal is it… I do this because I believe that if I don’t and I hear the name of the opposition, it will be bad luck and we will most likely lose the match. So as we sit in Al Memar’s room, I am uttering loudly in my head ‘Body tumour, Body tumour, BODY TUMOUR’, but his lips aren’t pursing for a B, instead he opens his mouth and clearly enunciates: ‘AN ANEURYSM’.

And my mouth went dry.

In my mind’s eye I see the Japanese report probabilities flash up like the final score on the display at the end of the match.

But Dr Al Memar is seizing the momentum and starts drawing a useful diagram of the carotid artery, with a balloon like shape branching off to the side of the inter cranial artery just above the fork.

“There is some good news”, Dr Al Memar is saying. “The aneurysm has a very wide neck and we believe it is patent (minimal / negligible clotting). He explains that this means that the risk of clotting building up in the balloon like shape and the aneurysm rupturing is currently very low, aside from the unpredictable effect of pregnancy hormones on the blood.” He continued:

“I have spent some time discussing your case with our team at St Georges, and we are all in agreement that we should wait until after you have had your baby. The best thing you can do is not to worry. You must focus and enjoy your baby first, and then we will arrange the angiogram and the operation”

The dialogue continues until we leave the room with a clear plan and feeling genuinely reassured. Dr Al Memar will call the Obstetrician and request I have a C Section to avoid the pressure of labour, I should take an aspirin every day to mitigate the chances of blood clotting, and we will arrange for the angiogram scan in 4 to 6 weeks after labour.

I call my Dad on the way home to let him absorb the details and then we head to the Duke’s Head on the river in Putney for a reflective Birthday lunch, inhaling some relative sighs of relief.

And for the first time in 3 weeks, I feel at peace, and sleep found me promptly after the 10 O Clock news that night.

Unfortunately our peace and sleep were shattered dramatically at 2.30 am when our room filled with flashing lights and a cacophony of sirens. 2 large fire engines, a large police van and an ambulance were first on the scene to try to control the smouldering flames of a house, 5 doors up on the left from our window. It had formally been a highly presentable 4 floor Victorian house, but the fireman would spend the next 4 hours battling to control the flames of a smouldering mass with two huge hose pipes. Alex was crouched up against the window like a small child watching Fireman Sam, providing me with sporadic updates until Barnaby joined us at 6am. The following day we would observe a scene from Silent Witness as white plastic suited characters would enter and leave the charred remains with their clipboards. One of Nick Clegg’s police guards who stands around the clock on the corner of our road, would confirm that the house had been gutted and a body had been found under suspicious circumstances.

As Alex had watched on, I lay there resigned to the fact that sleep would be hopeless, and tried to piece together how on earth 2 best friends could have the bizarre coincidence of discovering aneurysms in their cranial arteries in their 30’s. Dr Al Memar had described my aneurysm as ‘dissected’ with the prognosis that it was highly likely to be a result of a physical trauma to the neck in my past, akin to experiencing severe whiplash after a car crash. But I have never been in a car crash. So I challenged myself to think about whether it really could be just a coincidence or was there a physical incident that bound Lucy and I together. Could it have been the near fatal 12 to 15 foot wave that had crushed both of our backs and surf boards in the unforgiving surf at Puerto Escondido on Zictella Playa (translated as 'Beach of the dead') at the start of our Central American adventure in 1999.

As the scene got busier outside the window, I lay there recalling the feeling of my back snapping like a twig as I had given up with the struggle of finding the water’s surface for breath. When air bubbles did arrive, I had not even attempted to move my arms, but instead let the waves eventually beach me. With a sand- dimpled face, and a torn leash around my wrist I had found Lucy in a similar splayed position, holding her leash frayed hand to her back in similar distress. We had both been struck completely dumb with shock, and it was only after several rounds of medicinal Tequila that night, that our voice boxes had returned and we able to recount the experience.

Note the photo at the top was taken a few hours before our surf at Zicotella.

The weakness is this theory is that it was the middle of our spines (where I would later have a burst disc diagnosed on my only previous MRI) rather than our heads that had felt the impact of the wave’s power. So the only other link I can think of is the fact that we have both separately climbed high altitude peaks in our early thirties, being led on each altitude ascent far too quickly. For Lucy it was Kilimanjaro, and for me it was the lesser known peak of ‘Mardi Himal’ in the Himalayas. We both have described experiencing the ill effects of Hypoxia (oxygen shortage) on our descents and I have researched somewhere online that there is a higher prevalence of aneurysms in people who live at altitude.

But of course we will never know the cause!

Lucy King's Story

It was almost 2 years earlier in August 2011, when we received a very concerning email from Lucy’s mum - Bridget, explaining Lucy’s precarious situation in a Nairobi hospital. It would be 2 tortuous weeks later when Lucy was able to explain her horrific ordeal in person to Jo Priestley and myself when we went to visit her pre- Op in the ‘Hospital for Neurology and Neurosurgery’ in Queens Square. For Lucy the Queen’s Square hospital was the equivalent sanctuary as the Watergate Bay Hotel was to me. Despite the fact that she lay there on a busy ward, under the most inappropriate fluorescent lighting for a room full of people awaiting neurosurgery. No matter that detail, she was in London, England, home of the NHS and the best expertise in the world to address the terrifyingly urgent situation of a ruptured ‘post cerebral fusiform aneurysm’, and she had risked her life getting there.

After the neurological team in London had studied her scan after the angiogram, their feedback was that they had only seen a hemorrhage like that on a post mortem before, and as they prepared her for theatre, the Neuro Surgeon warned her that at best, she would probably lose her sight on her right hand side as a result of the operation.

The description of events that led to Lucy walking into a hospital in Nairobi partially sighted will always bring me out in goose bumps:

She had been studying and working with elephants in Kenya for several years, and at the time was the Chief Operating Officer for The Save the Elephants charity, spending most of her time in Samburu National Park. She described suffering an extraordinary migraine for 3 days before she raised the alarm for help. Her words were actually ‘A HEADACHE OF NOTE!”

On day 1, the headache was building like it had never done before, and on day 2 she was aware of losing peripheral vision on the right hand side of each eye. She was just about to put her hand up and seek help, when several shouting Kenyan rangers came running into camp, waving their arms in the air and shouting “poachers, poachers, come, come”.

Caught in migrainous confusion, unable to make a rational decision, Lucy King, as COO of Save the Elephants, didn’t feel she could put up her hand at that moment and complain of a headache. Instead she took the driving seat of her Land Rover and in convoy with her boss, she drove 6 rangers deep into the bush to discover the enormous corpse of ‘Khadija’ her beloved Matriarch Elephant and leader of the so called ‘Swahili’ group. Later they would go still deeper into the bush to find Khadija’s calf in the same predicament. With the noise of intense shouting, and faced with cameras in her own face, Lucy might have welcomed death at that moment too.

Instead, she somehow navigated back to camp without the benefit of her peripheral vision and with her splitting headache. The next morning she described her spine as ‘aching’ and her headache too severe to try to stand by herself. Clutching at her mobile phone she called her boss to say she needed to get to a Nairobi hospital that day and she needed help.

Dr Ian Douglas Hamilton has probably done more than anyone on this planet to save the plight of the African elephant, but on this particular morning his attention turned to getting his prodigy safely to Nairobi. He dispatched someone to get her dressed and upright, and arranged for the light airplane that had just arrived on the little airstrip at Samburu, to wait for Lucy and take her back to Nairobi. He was aware of another member of staff – Gemma, attending a hospital that day with symptoms of giardia. So he advised Lucy to head for that same hospital so that Gemma could be on hand.

Lucy remembers lying flat across 2 seats on the small aircraft shielding the light from her eyes. She called her boyfriend Pierre on arrival, incoherently attempting to explain that she needed him and naming the hospital that she was heading to. By fate, she recognised the cab driver at the airport, who would kindly return to the hospital later to drop off her luggage that she had neglected in the cab when she had arrived at the hospital.

Suitably concerned, Pierre, after struggling to understand her speech, had immediately caught a flight from Malindi. On arrival, he would locate Lucy lying in a ‘proper African ward’, full of women dying around her. He was horrified and quickly arranged for a private room, chasing the team for results of a CT scan, which would reveal a ‘large blob’ at the back of her skull. He called Lucy’s mum in Eastbourne, who raised the alarm with Lucy’s closest friends and family, and got herself to Nairobi the next day.

Whilst Nairobi was a better place to be than Samburu, they simply didn’t have the medical expertise in Kenya to properly diagnose or fix the problem, and it was determined that they had to get Lucy to either Cape Town or London urgently. Days would be lost when the MRI discs showed up in London blank, and the Nairobi hospital administrative office was then closed for 3 days. Somehow team Lucy would keep their nerve and push through every barrier that came their way, though at a frustrating African pace. Finally 2 weeks after walking into that hospital, Lucy was taking up 9 Kenyan Airways seats, strapped to a stretcher, with a Doctor and her mum accompanying her on the flight to London Heathrow. After advice from my Dad, Lucy’s sister Sarah had raised the necessary paperwork with Lucy’s UK registered GP, to enable a smooth transition from Heathrow and into the Neuro Hospital in Queens Square.

On tenter hooks, we received confirmation from Bridget that the operation appeared to have been successful, and that Lucy had confirmed that she could see when she came round. As will be the case with my operation, she needed to spend 24 to 48 hours in intensive care, lying perfectly still to enable things to set in place. In Lucy’s case, the ‘thing’ was a sort of super glue that had been injected intravenously into her groin and by a remarkable endovascular method had got to the back of her brain. It would set to seal the aneurysm, blocking out the artery entirely. Given the surprise news that Lucy had confirmed she could see, the doctors concluded that capillaries had grown around the artery to step in and perform the artery’s job to supply crucial oxygen and blood to that compartment of the brain.

After 24 hours in intensive care where she was woken hourly to be monitored, Lucy had her darkest post op moment: The nurses had raised the angle of the bed slightly towards the upright position and left the room. When Lucy opened her eyes, she realised with terror that she had lost her sight and hit the panic button. The medical team rushed back and lowered her once more which joyfully had the effect of bringing her vision back.

Lucy’s situation had been beyond traumatic and precarious, and she would need to take some time to recover at her mum’s flat in
Eastbourne before returning to Kenya after her heroic medical team gave her the all clear.

Present Day and Perspective

Yesterday was another beautiful summer’s day. In the morning I saw the midwife who confirmed that all was well, that Monty has a very strong heartbeat, and on prodding my tum she confirmed ‘this is no Tiddler’. At lunch time I got through to Lucy on the phone to play back my recollection of the facts of her story, and after the call I spent a glorious afternoon on the river bank in Richmond with Barnaby and friends. Before going to bed we found our new Cornish home that we have named ‘Wave Watch’ is now advertised on the Pure Cornwall website for rentals in July. We’ll feel even better when it is complete!

Back to lunch time, and Lucy answered her mobile on the second ring, having just arrived at a guest house on the edge of Tsavo National Park. She was tired after an 8 hour drive to her next field trip, but buzzing from her sister’s wedding last weekend on the shores of Lake Naivasha. She of course wished me luck for Monday, tuned into our timings, given we have already asked her to be God mother to our impending arrival.

Lucy’s insight from her experience has been incredibly useful to me after confirmation of my aneurysm, especially when she called me back from camp in February, providing much needed context to my google research:

“What decade was the research covering” She’d checked. I’d recalled it was 1987 to 1997.

“Brilliant” she had replied. Almost all the data you can find on line pre-dates 1997. That’s when they started to introduce the new endovascular procedures which tend to be safer and more successful than open surgery which is often deployed as a secondary measure. She had learned that in reality the survival probability is much higher than the data suggests, there just aren’t enough cases to bear that out statistically yet.

The perspective I have from Lucy’s story is not so much that she survived completely against the odds, but the way in which she has responded since the trauma:. As she recovered in her mum’s flat in Eastbourne, slowly improving her sight each day and rebuilding her confidence to go for walks outside again; she began to read large print, and started to write an abridged synopses of her PHD on ‘Elephants and Bees’to apply for a prestigious award. 2 months later after an MRI confirmed that the operation had indeed been successful, she also learned that day that she had won the UN prize for the best PHD thesis, the cheque and award for which she would need to collect in Norway later that year. It had been a good day for Dr King, and we found a link to her prize winning story on the home page of the BBC website. You can also see her smiling face on the current front cover of the Biology Journal.

Whilst grateful to all that England had given her, Lucy would return back to Kenya, fully acknowledging the place as her home, and moving into a wonderful house with Pierre and their dog on the outskirts of Nairobi. She still represents Save The Elephants today, but soon after returning she resigned from her role as COO recognising the position to be putting her health under too much stress. Instead she has turned her full focus to implementing the findings of her PHD - Essentially she helps farming communities across multiple countries in Africa to roll out win-win programmes to install bee hive fences employed to protect the farmer’s crops from elephant raids and at the same time providing farmers with the much needed extra income of honey production. (Her experiments had proved that the African honey bee is a natural deterrent to elephants). It is a brilliant model, and her charismatic presentations and evocative videos and media footage have propelled her to win every award she has entered across Europe since - funding her work and a rather comfortable upgraded Land Rover. If you are not already linked to Lucy, you should go to her website www.elephantsandbees to track her progress.

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My intention in writing this blog was not at all to solicit concern or sympathy, as I feel humbled by others who face far greater traumas in their lives. I just wanted to enjoy writing the story and I truly feel incredibly lucky:

I feel lucky because we conceived in a matter of weeks after first visiting the GP. I feel lucky because of the amazing cast of doctors, nurses and radiologists involved in my case, they have freakishly made the discovery of an aneurysm, doubtless years before it might have developed into a really dangerous situation like Lucy’s had. With the diagnosis confirmed, my delivery can be well managed and I’m in a great position to be fixed. I feel lucky that I have such a close family on hand to support me, including parents who can be both mum and dad, and doctors to advise. I feel lucky that I can always draw on amazing friends both old and new, and that both my husband and son are so happy natured. I also couldn’t be happier going forward,if a successful operation allows me to say goodbye to future migraines, as has been the case for Lucy.

Perspective also comes from feeling humbled by other people’s strength in their periods of sustained adversity: I can draw on my sister as a role model – she juggles being the most amazing mother to her 2 beautiful boys, with fortnightly treatments, and regular scans to deal with her terminal cancer. She is courageous, and so far, the success of her treatment and continued good health is in itself a remarkable story against the odds.

I am also particularly humbled by the strength showed by our great Dutch friends in Putney – The Trommels - who last year, arguably found themselves in the most traumatic situation that anyone could ever face. Just skimming the surface, here is my insight of Froukje and Bastiaan’s story in 2012. Alex and I like to refer to them as 'The Dutchies’:

The Dutchies Story

We had picked up their daughter Famke from nursery that day, (Famke is best friends with Barnaby having been adorable playmates since their birth 2 weeks apart in early 2010). When Famke woke up in our spare room, we had the great honour of telling her the wonderful news that she now had a little baby sister called Karlijn. But within hours of breaking the happy news, it was discovered that she had been born with a rare liver condition and Froukje and Karlijn would have to be transferred by ambulance from Kingston to Kings Hospital in Camberwell.

As long as I live, I will never forget my coming together with Froukje in an atrium on the ground floor of Kings Hospital one day later. Embracing in a hug, she let out the loudest and deepest whale of aching pain that I could ever imagine, it seemed to echo throughout the entire hospital building. I thought the window panes might crack and minutes later with her still trembling, I finally pushed her back to see her face and softly asked:

“Is she still with us?”

“Yes” Froukje confirmed “Just!

Please come to the ward and meet her”.

2 weeks later I would be looking on at the doorway of Bastiaan and Froukje’s tiny hospital bedroom along the corridor from the critical care unit. In the cramped space , sitting on each single bed either side of the room, were Bastiaan, Froukje, her mother, father, sister and brother, all of whom had flown over that morning from Holland, when I’d picked them up to bring them into hospital. As they sat there, Froukje started to tell the story of a crushing set back that day as she tried to articulate that she still held the possibility of hope. She shared her belief that it wasn’t over just yet, and that the miracle of the liver transplant that might somehow become available for her 5 lb baby who lay in a tiny cradle on the critical care ward around the corner, still might happen as seconds, minutes and days passed by. And as she spoke through clenched desperate tears, each family member one by one, had hunched over, shoulders beginning to heave in unison with cries of their own. Despite the intensity of the story telling, Froukje, and her brother and sister would look up at me and take it in turns to translate each line of Dutch. As Froukje continued expressing her feelings in two languages, each of us in turn reached out to hold each other’s hands in a circle, crying as one.
Somehow, in a perverse and incredibly strange sort of way, I steel feel privileged to have been there to bear witness to this cramped room filled with family pain, hope and support.

And on a Tuesday morning, 3 weeks after her birth, Karlijn, whose organs were beginning to fail one by one like a pack of cards, was somehow still being kept alive. Froukje called me to tell me the unbelievable news that a suitable liver had turned up a few hours north of London, and their amazing Peruvian Surgeon was accompanying the precious parcel to Kings Hospital after he had operated on the donor to remove it in an operation the night before. Froukje was careful to hold herself back on the phone, and was methodically detailing what lay ahead: The Peruvian Surgeon would need to rest and get some sleep for a few hours on arrival at Kings, and then that night they expected him to embark on what would be a 12 hour operation to insert and stich up the new slice of liver into her tiny fragile body. Froukje and Bastiaan knew the risks were extreme, but finally they had a crumb of genuine credible hope.

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Remarkably today just over one year on, the Trommels are now a happy and positive family of four. I am sure a day doesn’t go by when they don’t feel gratitude towards the donor’s family, or feel relief for the beautiful second daughter that they have. But life at the same time is always going to be quite hard, and only last Sunday, on Froukje’s birthday, Bastiaan had to take Karlijn back into hospital for a few days again, as she had caught a bug. The sort of bug that all babies catch and get over with simple rest, some TV and a spoon or 2 of ‘Calpol’; but The Dutchies cannot take that chance with Karlijn and she will spend a few days recovering in hospital each time. They are also wary that a difficult operation still lies ahead for Karlijn to fully re-stich up her stomach. So despite encouraging steps forward, they also have consistent steps back, disrupting normal daily life and restricting them from taking holidays abroad. Yet they both remain remarkably strong and positive and happy, and an inspiration to their dear friends in Putney.

The Dutchies also have the perspective of the debt they owe to the NHS. Although there were moments at Kings in Camberwell, when they had longed to be at home in Holland with their support network on hand and the comfort of familiarity; they know that had Karlijn been born in Holland or indeed outside of London, she most likely wouldn’t be alive today. So when a giggling Famke, a grinning Karlijn wearing a Union Jack vest and a fantastically happy Bastiaan and Froukje joined us to re-watch the opening ceremony of the Olympics last July after the Olympic road race went past our house; we raised our glasses of champagne to toast the wonderfully choreographed scenes that Danny Boyle had created in tribute to the NHS.

I also thought back to the happy tribute when a letter arrived from Dr Al Memar in February, naming the extensive team of doctors who have studied my scans and will be involved in my own surgery. Dad was fairly chipper when I sent him the letter during the Man-U v Real Match. It was a great evening for him, enjoying the fury of Fergie as his team would unfairly have a man sent off and crash out of Europe; and then receiving a list of 6 names of doctors, 2 of whom he knew of and respected greatly, and the rest of whom he would later satisfy himself, were thee national experts in their field if not internationally. And with that information to hand, there was nothing more in our control left to do, allowing both my parents and I to fully move forward (I hope)from the confirmed diagnosis.

To conclude part 1 of this blog, I’d say that it’s not really about the bloody aneurysm anyway. Like Lucy it is all about how I respond, and if I can continue the start I have made this year to live my life with guts to take similar life affirming decisions and risks in the pursuit of fulfilment and happiness like she has done, than I can continue in this happy and excited vein. Roll on Monday morning!

Links:

https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/registration_form.asp

http://www.elephantsandbees.com/research_project/Welcome.html

http://www.savetheelephants.org/

http://www.purecornwall.co.uk/

http://www.guardian.co.uk/football/2013/mar/05/manchester-united-real-madrid-live-mbm

Portreath

The wind was up that day, buffeting the surf boards against the roof of the car as we screamed down the A30 towards our turn off. When we drove around the final bend into the village of Portreath, we could see the wind whipping up white horses along lines upon lines of surf, breaking from the harbour wall to the right and then traversing westwards across the bay. We turned past the Atlantic Café at the fulcrum of the beach, and parked on Battery Hill which banks up a cliff, above the surf and lifesaver club below. As we stepped out, doors slammed back against us, the chill got inside our anoraks, and sea air seeped into our lungs. Just then the sun broke through from clouds which were starting to retreat from the North Coast for the day,and the village of Portreath which had initially looked grey and tired and yesteryear, sprung teasingly into life. Brilliant winter light danced across her harbour, kissed the ocean below, turning deeps blues into aqua marine wash, playful plumes of spray brushed against dramatic rocks to the left and right and disappeared around the headland and out to sea. Fulmars soared up from the cliff below, surprising us and heckling as if they’d just heard a bad line at the comedy store; and dust quickly started to build up on our car, a nod to the building work behind us.

“I think this is this one”, I said, turning to look up at a large 4 story house set back from the road and into the cliff side.

I’d been looking at a CGI image of this very house every day for the best part of 6 months. In each dull interlude at work between meetings or emails I would find myself on the Chartsedge website – an agency specialising in high end homes in Devon and Cornwall. Despite the price tag, I would be drawn to this particular development, and would check each time if there were any gallery images I had missed on my previous log in. There never were. There was something about the large open plan living space, with floor to ceiling windows providing an uninterrupted panoramic view of the Atlantic thundering in, framed with craggy headlands on either side. And despite the building work being at a fairly early stage, reality was better than any architect’s image, and we could instantly see our dream laid out in front of us. It was every house I had ever coveted.

It was now 11am and we were supposed to be meeting a guy called Barry who was due to show us around at 10:30. The apologetic builders had let us in and given us a hand up each flight of unsafe wooden stairs, as they tried Barry on his mobile once more. We were standing in the master bedroom looking out of a huge window,imagining Barnaby doing sprint training on the beach below, when Barry finally arrived. We turned to see a huge pirate of a man walk in, shoulder length salty blond hair wrapped around his face, huge calves bulging out of long shorts and large feet spilling out of sole-less shoes.

“Sorry I’m late”, he said in his soft Cornish accent.

“I’ve just walked in from St Ives and it always takes longer than you think along the cliff walk, especially in this wind…The surf looks good today though, doesn’t it?”

I was just creasing my forehead thinking about how on earth anyone could do a cliff walk in sockless feet and buckled leather shoes when Alex asked him:

“How far is that then? How long did it take you?”.

Barry replied: “Well I got drunk you see last night in St Ives, and so I couldn’t drive back and I don’t like taking the bus. So I had a few hours kip on a friend’s sofa and then I set off at 6 ish. I think it’s about 21 miles if you follow the cliff walk. Beautiful morning though, beautiful! Bit windy mind!”

And this was our introduction to the enigmatic Barry - the developer and crafter of our dream house. He oozed Cornish warmth, sincerity and unintentionally would have us laughing and smiling in hope for the months to follow. Always slightly evasive on detail:

“How many kids do you have” Alex had asked after we discussed the local primary school in depth.

“Well at any one time there can be up to 10 to 18 people in our house. That’s why I’m going to go for a surf before I go home. I surf every day if I can, 365 days a year. Are those your boards on the roof down there. Do you like surfing then? Is he going to be a surfer? He should join the nippers club. Best surf club in Cornwall that is"

We are sold hook line and sinker, even before he takes us around the completed house next door, where the London owners have set the bar ridiculously high in their tasteful and luxurious fit out. We are reassured by the finish and quality throughout, and Barry confirms they are doing very well with holiday lets.

“Do you like it? We ask Barnaby “Would you like to live here?”

“I want to go back to the hotelllll” replied Barnaby. “I want to go back to the pooool. When can we go back to the pool, I want to go surfing in the poool, nowwww"

He is soon distracted when we go inside the surf shop at the bottom of the hill, and he discovers a large bright red skateboard. “I’m going to be a skate boarder mummy, I’m going to go really, really fast”.

The shop owner agrees that Barnaby may well become a skater if he comes to live here, and he’d be able to show off at the annual body-boarding championships that are held in Portreath each year. Apart from the surfers on display, dare devil skate boarders will come careering down Battery hill sloping round the corner to the beach doing their tricks at break neck speed.

“Looking at one of Barry’s houses are you?”

“Yes – that one there” replies Alex. “Do you know Barry? How many kids does he have?” asks Alex.

“Oh he’s got a few, never any trouble mind, they’re always knackered you see, he walks them everywhere. He makes his 6 year old walk to Hayle and back for lunch across the cliff top there.”

Having talked to a few more welcoming locals, and after checking out the pool at the 5* Gwel an Mor resort above us, we finally give into Barnaby and head back to Watergate. Pointing out the football pitch at the primary school, the BMX tracks off to the left, and wondering what enchanted secrets lie behind the Tehidy Wood gates as we pass.

Inspired by Barry, Alex is quick to unwrap his blue and white striped Local Hero 9 ft 4 longboard and run into the surf on our return, whilst I wrestle with the idea of forcing my wetsuit around my growing bump, but reluctantly give in to common sense. So Barnaby and I retire to the Ocean room with a packet of crisps to watch his daddy dodge kite surfers from our comfy window sofas.

“Is that him, mummy? Is that daddy standing up there, there?”

“Well briefly” I said.

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Sunday is all about Barnaby as it should be. It is his 3rd Birthday which starts dramatically at 5am when we awake to a horrible thud as he falls out of bed, face planting on the unforgiving wooden floor below. We race into his room, and join him in the bunk beds to sooth his face and watch his ‘Father Ted’ box set, marvelling at the educational value of the farmyard mechanics.

Despite the abrupt start, the day washed over us all happily with presents in bed, an enormous breakfast, more surfing and swimming and kite sailing on the sodden beach. Cheeks were filled with burgers and chips and ketchup from the Beach Hut restaurant which sits under Jamie's Fifteen, and we all bathed in the healing powers of Watergate Bay. We would be very sad to say goodbye the next day, but our minds were buzzing with the ethereal image that the Portreath house had presented.

As the iPad provided the Chuggington background noise on the car journey back, my mind had turned back to a profoundly brilliant course I had been on 4 years earlier with my company. The course is known as “The Energy Project”. It sounds entirely cheesy to explain it, but it was one of those courses that cynical attendees alike got something out of. One challenging exercise we had been given on day 3, was a blank piece of paper on which we should draw our dream future – be it the job role, a place or whatever came into mind. I was considering leaving the page blank when I saw that even the CFO was drawing something. So I took hold of my pencil to see what I would draw, and moments later, barely decipherable, I had scribbled an image of myself at a desk, dwarfed by a surf board in a house on a cliff above a surf beach. It had taken me aback at the time when asked about it, as I expected myself to say I wanted to be the CEO one day of a medium sized company, but I forgo the opportunity to show off with my ambition and had articulated that I simply wanted to do a job that would allow me to surf every day, in a location that would inspire the book I still thought I had in me.

I don’t think anyone had taken me seriously, least of all myself. Until that weekend that is, when I was trying to facing up to my own vulnerabiity and had felt I'd glimsed our dream future.

In a similar vein, Alex had never managed to shake off the happy recollections of childhood holidays in St Agnes (just 10 min drive from Portreath) where he would endlessly muck around in rock pools with his Dad, returning to a little cottage in the evening on the corner of ‘Stippy Stappy’ road which is at the top of the hill from Trevanance Cove. We had talked about our ideal destination together, and Alex just wanted to live somewhere safe, where the kids could enjoy the outdoors, get fit and play out their Enid Blighton adventures, far away from the urbanised lure of the video game.

So chatting on the way back, and agreeing to park the small quandary of how we would derive an income in Cornwall, we agreed that we would go for it; and that I would call Miles (the agent) on Tuesday morning and offer him the asking price. In fact before we came off the M5, I had placed that call and left a message for him to call me back.

As I started to put the iphone down, it vibrated back at me. So I took the call excitedly expecting it to be Miles, but instead I was met by Dr Al Memar’s secretary. She was calling to say that Poirot wanted to put the Tuesday appointment back to Thursday in order to more widely confer with his colleagues on Tuesday afternoon. “Has he got the results then”, I asked.

“Yes, I understand he has”. She said.

And the rest of the car journey passed by quite slowly after that.

Confirmed Diagnosis to follow

Cornwall heals

I have learned that when you’re going through a traumatic experience, as was the case for me at the start of the year - then you need to hit a low point, acknowledge it, and then move irreversibly and determinedly forward from it.

As I sit here now in the present tense, on another sunny day enjoying the buzz of the effervescently popular Artisan café in Putney where I write this blog; it is quite hard to evoke the raw emotions and fear that I felt at the start of the year because I have not since returned to those memories. I have moved on completely - focused and excited about our future family of 4, and determined that the life that Alex and I have always dreamed of living, but not quite had the balls to go after, will truly begin after my impending operation.

But for this post, we go back to the first week in February, when my lowest moments came on the evening and the morning after my second MRI whilst travelling on a small plane to Cornwall with Barnaby.

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The second MRI was far less traumatic with a friend on hand, and with the experience of the first, I was able to fix my mind on a point above my head and take long deep metronomic breaths. The session was well choreographed by the radiology manager who had been brought in from St Georges, and would talk to me in between each scan, breaking up my anxiety and getting me to the end quicker.

It was a crazy day looking back – I hadn’t wanted to pull out of an all company presentation that afternoon where 100 or so colleagues would be gathered in an auditorium in Clerkenwell specifically to hear my presentation and take a tour of the new office that I was managing at the time. Having rushed from the MRI room after they had removed my rhino like folds of grey casings around my neck, I quickly got back home to change, and ran from train to taxi to conference centre to lectern, flanked by my powerpoint presentation either side. I would later be satisfied with a job well done and the laughter that I had invoked, but the adrenaline downer on the painful commute home to collect Barnaby and the tension of the day would create the perfect conditions for the back of my neck to clamp shut, and the beginnings of the worst migraine I ever need to endure.

With Alex meeting us for a mini break in Cornwall by a surf board laidened car the next morning, I was without the security of his support to get Barnaby packed and through his bedtime routine that night, and to the airport the next day. But nothing could deter me from my mission to get us both to the sanctuary of the gorgeous Watergate Bay Hotel and the short break that we so desperately needed together as a family. Though looking back, we made it in spite of me, and because of Barnaby’s wonderful compliant behaviour and support. I have never met a toddler who can show such empathy and behave so adorably when I truly need him to.

I try to live my life with few regrets, but I fully regret turning on my laptop that night after I’d got Barnaby to bed. I have not allowed myself to indulge in any negative thinking, nor let the tears properly flow since that night. As a mother, it was entirely irresponsible and unproductive and a place I can’t afford to return to.

On the assumption that I have an aneurysm, my search string quote from Dr Clifton’s report had led me to a Japanese report on a decade of data comprising ~ 100 cases of aneurysm operations with the same characteristics and expected location as my own. It was not a good read! There are seemingly not enough cases in Europe to provide similarly robust statistics. Despite being in a migraine stupor at that time, I can still quote the report verbatim as I did to myself over and over in bed that night, indulgently letting my head run away with the 2 negative scenarios available. I fed my migraine with sobs and tears,preventing me irrepressibly from sleep.

It was Barnaby who got me up at 6am.

“Mummy, is it time to go yet? Is the taxi here? Can we go to Cornwall now? Please mummy? Yes mummy?”

And it was time to get up, and possibly for the first time in his life, Barnaby went back downstairs and got fully dressed into his travelling outfit all by himself, whilst I surveyed the wreckage of my red eyed face and my sore head that had been fed just 30 minutes of sleep.

“Come with me mummy”, Barnaby said as he led me and his Gruffalo Trunky bouncing down the stairs to the front door, where outside the taxi was indeed waiting for us.

I obviously read the signs when we arrived at Gatwick, but I could swear that it was Barnaby who led me to the gate and not the other way round. He loves airports, he loves planes and he loves Cornwall, and I have never known him to be so helpful, well behaved, and completely compliant and good natured on every request. It was as if he sensed that he needed to be in charge that morning.

As we got to the height of our climb, with the small Flybe jet preparing to descend immediately, I placed my hand on my forehead where I could feel the mother of all migraines throbbing in my palm. I could sense that all the blood had drained from my face, and when I closed my eyes I saw the psychedelic lights of a children’s light shaker. It was at that hellish low moment that I thought of my irresponsibility and the possibility that I might black out, leaving Barnaby sat next to me on the back row with no instructions as to what to do with him. Who would know that his Daddy would be meeting him at The Watergate bay hotel if his mummy wasn’t conscious on landing? How had I not even asked the neurologist if it was safe to fly on a short flight that would actually present more air pressure force than a longer one? Damn the knowledge from my degree! Just then Barnaby looked at my glazed over eyes, stopped sucking his lolly and said:

“Is your head poorly again mummy?”

When I nodded, he said “It’s ok mummy, I’m here, let’s look out of the window together, shall we? Yes mummy?”

And we could just make out the toe of Britain, as a shard of winter sunshine crept out from a cloud and shone a torch on turquoise waters lapping the shores of the Lizard Peninsula, with the plane banking northwards towards Newquay. I felt the pressure relief valve open a little at the back of my neck and inhaled a deep breath. .

The second that Alex made it to the hotel after a long car journey, I handed Barnaby over and told him I needed to be in a dark room alone for some time to recover. The boys dutifully trotted off and had a ball in the stunning hotel infinity pool that ends in a huge glass pane looking out over Atlantic rollers that seem to threaten to come right into the pool.

As ever when I need it most, sleep evaded me, but after a few hours of rest I ate some microwaved porridge that I’d bought at Gatwick, sat upright and would later be brought back to life by Barnaby’s unconstrained delight that he had swum the 30m length, aided by arm bands but not by Alex (remarkable given how clingy he normally is in the pool). Alex is beaming too:

“You’ve got to see it for yourself Soph, come, come”.

And so I followed them to the ‘Ocean Room’ lounge where I looked on at Barnaby’s infectious splashing in the pool below and let his squeals of joy wring happily in my ears. Later I would join him in the lovely chlorine free water, and turn to watch the sun setting on the beach through the enormous glass front. I had reflected that if I was given an unlimited budget to design my perfect beach side hotel, I would struggle to conjure up something so perfect as this place.

I was already beginning to feel cleansed, my bad head was retreating, and after 10 or so hours of sleep that night I started to feel human again.

In fact Saturday would be a brilliant day and a turning point, it was actually the day when the nightmare regressed into the background, replaced with the glorious vision of our dream future that still fills my daily thoughts and feels well within our grasp today.

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‘Confirmed Diagnosis’ and ‘Making Plans’ to follow after I've scrubbed the mildew off the Bugaboo from the damp cellar…

The First MRI

Anyone who has been pregnant knows that it is not a great idea to lie rigidly flat and still on your back for 40 minutes whilst your concave bump blocks your eye line as you lean forward. I had had an MRI scan a few years earlier and found it claustrophobic, but time limited and manageable. The ingredients were different then. This time round I was not wholly encased in the chamber but my head and neck were surrounded in layers and layers of casings like a 1940’s deep sea diver. The radiologist handed me headphones, a panic button which I held in my sweaty right palm, and a sort of periscope to see her with. Of the music options on offer, I made an idiotic choice, but no matter - the beauty of the MRI scan is that the music is completely inaudible except for the brief respites in between scans when all you can hear is the sound of your own pulse anyway. Actually in my case I wasn’t sure if it was my pulse or Monty’s – it sounded a hell of lot quicker than the ultrasound had measured it the day before, and I couldn’t distract myself from it for a moment.

‘Is everything OK’ asked the radiologist: “Just 3 scans left – 2 short ones of 3 mins, and 1 long one of 7 minutes and then it will all be over”.

“OK” I replied.

Of course I wasn’t ‘OK’, but I was entirely focused on the finish line and didn’t want anything to delay its arrival. My left leg had just fallen off its position on the bed and since my core muscles were incapable of pulling it back again, I tried to find some kind of meditative psychic state that might coach it upwards and back again. But I couldn’t move it an inch. Maybe I would have been able to if I’d been to any of my pre-natal yoga classes. I would decline the periscope device for the subsequent MRI 2 weeks later, as all it did was focus my thoughts and eyes on the submarine lump in front of me. I had signed the disclaimers before entering the room - something about a theoretical risk to the hearing of the 4 month foetus, and I’m not sure the intense anxiety was doing my blood pressure much good either. As I lay strewn, I thought of all the amazing technological advances that had happened in the last few decades and wondered how on earth nobody had come up with a way to reduce the decibel levels of the MRI. I braced myself once again before the pneumatic drill sound of the MRI gripped my vibrating body in a noise deafening envelope, pummelling of all my senses at once.

Finally it was over and the female radiologist approached me to take off the casings around my head and help me up. Once up right, I felt a dull sensation in my back, and slid off the bed, stumbling to the floor. The radiologist’s assistant swiftly came to my side and supported me with an arm under my shoulder to usher me back to the waiting room. I felt so sorry for the next patient who saw my useless legs shuffling on the floor incapable of coordination. I think I was suffering some kind of temporary paralysis that I would also repeat the next time. It was probably the combination of lying flat and the intense anxiety level that I had never physically felt so acutely before. But save for the inevitable migraine that the MRI had induced, I got over it all very quickly, and was up and walking a few minutes later and back to work that afternoon.

Parkside hospital is ruthlessly efficient at every appointment and every step. The following afternoon I am sat behind the Endocrinologist’s desk being reassured that the tumour identified in my pituitary gland is fairly microscopic and will likely be treated very easily with tablets post breast feeding. He is not at all concerned and I agree to monthly blood tests and follow ups to monitor the hormone balance. So no dramatic surgery required after all and I almost feel a sense of anti-climax. Unfortunately that is not the end of the £150 consultation. Despite reporting on the scans so quickly overnight, the radiologist, with her remarkable diligence has picked up some shadowing on a view of my neck in 1 of the 18 scan views taken. This specific scan sits on the Doctor’s desk, circled in red pen.

“Here you can see shadowing in the artery in your neck. You need to get this checked out with our neurologist here” said the Endo Dr as he brought me to my feet and escorted me swiftly to reception to get an appointment with Dr Al-Memar. I agreed to an appointment offered by the receptionist the following week, but the Endocrinologist questioned if there wasn’t an appointment available that same day. I’m offered 7pm, but decline as Alex is working away and I can’t quickly think of a babysitting option. It’s only as I drive home that I reflect on the apparent urgency that the Doctor was encouraging.

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“Mrs Orme, please sit down here. Now may I firstly remark on what a large and beautiful brain you have. Look at the image on the screen - it is just as it should be. The brain is a beautiful thing”

I am immediately disarmed and charmed by his warm smile and upturned moustache.

Dr Al Memar looks like an Egyptian Hercule Poirot, he is thoughtful, well considered and generally running late. We discuss my migraines for about 20 minutes, which is a huge relief as I had neurotically pushed for such a discussion with an expert for many years, only to never be taken seriously. He draws a diagram to share with Alex:

“It is important that your partner understands the physiology behind the migraine, the recovery cycle and all the potential causes. It can be just as hard for your partner as it is for you to understand and manage”.

This guy is brilliant I think. Better still he says that after the baby is born I should return to see him, and he will prescribe some fantastic high strength new drugs that will ensure the headache never gets to the debilitating stage.
Reassured and fairly relaxed, we finally turn our focus to the shadowing on the MRI and I ask what it could be.

“Good Question” says Poirot. “It looks like you have some kind of obstruction in the ‘right carotid artery’. The two main arteries that supply blood to your brain are in the right and left side of your neck, known as ‘carotid’ arteries.” Again he is drawing. “Your right carotid artery of course supplies the right hand side of the brain which actually controls the left hand side of your body. I believe that the shadowing is a large body tumour (benign), an aneurysm, or actually nothing at all”

“How could it be nothing at all”, I ask.

He responded with the explanation that it could just be a misleading scan showing a multitude of cross sectional vessels overlaid on top of each other to appear like an obstruction. At this stage, our Poirot is leaning towards the ‘something and nothing’ diagnosis as I had confirmed that I don’t faint or black out. However, he explains that we must explore further and he arranges for me to go to a hospital in Cheam, Surrey to see a ‘Dr Clifton’ the following Tuesday. Normally the Neurologist would have arranged a so called ‘angiogram’ and CAT scan which would be conclusive quickly, but the angiogram consists of injecting a radioactive dye into the vascular system which is of course a no-no for a an expectant mother. So he admits that getting a confirmed diagnosis will be tricky, but he conjures up the image of Dr Clifton’s magical neuro-radiology powers. “Clifton is thee expert in the Country and I need his judgement on this”. So Dr Clifton will study my neck with ultrasound equipment, much like the baby is monitored. It is an entirely non-invasive risk free technique. Poirot also assures me that he will not request another MRI until I am at least 6 months pregnant, as he is not comfortable with the risks another scan might present at this stage.

I call my Dad after the appointment and read out the radiologist’s description of the obstruction – 3cm in diameter, ‘ovoid’ in shape and situated at the bifurcation of the right carotid artery’. Dad makes some enquiries and later that day calls me back to say that the thinking is that it is most likely a ‘benign body tumour’ if anything at all.

“More exciting than the prolactinoma, but not a particularly exciting diagnosis, Sophie.”

He explains that a surgeon will need to remove it at some point but points out that the neck is a brilliant healer. “You’ll hardly even have a scar. It could be nothing, as the neurologist says, but it’s unlikely to be an aneurysm as they are so rare.” I felt that the inference was that an aneurysm might tip the scale into the exciting zone.

Once again I appreciated my parents’ fast track medical opinion and network, and more than that my Dad’s vocabulary. I could work with “not particularly exciting” – it brought my hypochondriac thinking back down to earth. The phrase reminded of when I called my Dad up when I was endlessly waiting at A&E to get my cheek bone x-rayed after a lacrosse tackle to my face. Dad had asked me to describe the pain over the phone. “Would you say the pain is exquisite” Dad had asked. I paused at the unexpected adjective, and had to conclude that ‘no – it wasn’t exquisite as such.” So Dad confirmed it couldn’t be broken and I should get myself home, which I did. “No, not broken apparently” I’d reply the next week to my colleagues when I sported my distorted purple right cheekbone.

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My iPhone map led me pretty quickly to St Andrew’s hospital in Cheam. It is no Parkside, with no Times in the waiting room or offer of a Twinning’s tea. I’m quickly called in by the nurse into Dr Clifton’s room where I sit in a dentist like chair waiting for the Dr to return.

“He should be here in a minute”, the nurse says again 30 mins later. We’ve covered all the usual small talk by now – ‘No – I don’t know if it’s a boy or girl’. Yes – I already have a 3 year old who’s a bit naughty to be honest’. ‘I’m actually only just over 4 months pregnant, and no it’s apparently not twins’.

When Dr Clifton arrives, he nonchalantly turns on his machine and bangs the large computer element until it resonates and hums into life. He introduces himself and picks up the Dove like deodorant stick of the ultrasound instrument on a chord and starts rolling it back and forth along the right side of my neck. It sounds very much like the heartbeat of Monty, only slower. After about 10 minutes of rolling and listening to the rhythm of the blood flow I relax and my mind is transported back to my aeronautical engineering studies at University. I’m back at Wills Hall at Bristol and my Z block corridor mates are amusingly doing impressions of Northern Ben who has come through the toilet block corridor from X block.

“Sophie can you help me with my fluids homework”.

Ben’s from Rotherham and very much proud of it, his ‘can you help me with me fluids’ line had sounded much like the Yorkshire boy’s accent in that old milk Acrington Stanley who are they? advert:

“Surrrrphyyyyy, what makes a liiight, light?” “Electricity of course”

And of course the ‘help with me fluids’ phrase also induces some fresher’s year puerile giggling.

The point is that as the ultrasound roller ball travelled up my neck, Dr Clifton was comparing the sound and speed of the blood flow as it navigated around the ovoid obstruction on the right side with the normal direct blood flow expected on the left hand side of my neck. I couldn’t see the information on the screen, but I could hear the difference, and pictured the blood travelling around the object, just like I could see diagrams of distorted air flow around an aerofoil shape in my mind’s eye – creating the lift force responsible for the wonderful concept of flight.

So I had achieved a far better Zen like calm in that room for the 40 minute scan than I had with the MRI, but the repeated rubbing and sensation of feeling the lump had invoked a hideous nerve ending headache which started on the right side of my face and travelled across it to my left ear in sickening fashion that would stay with me for the next 4 days. I have not even tried to touch my neck or locate the lump since that day.

“Can you find anything there” I asked Dr Clifton.

“Yes, most definitely” The Dr replied. I’ll send my report to Dr Al-memar by the morning.

I wouldn’t get to sleep that night ahead of a boisterous Barnaby bundling into our room at 6am the next morning full of 3 year old chatter and questions. I’d looked up images online of tumours and aneurysms at the fork in the carotid artery, and realised that whatever the lump was, it would be wrapped snuggly in a bundle of nerve endings. I thought of my migraines in a different light, and felt nauseous and quite awful at work that day.

On Thursday I would return to see the Egyptian Hercule who was not his cheerful self. Despite his previous comments about MRI risks before 6 months, he would march me back to the x ray department and request a same day MRI. Calls would be placed to St George’s hospital arranging for the right people to attend the MRI that lunch time. With the time I had, I took myself home to grab a sandwich and my laptop and try to call Alex unsuccessfully at work. For me, Dr Clifton was heavily leaning towards the diagnosis of an aneurysm in his report and hence a step up in perceived risk and urgency. I called my old Z block Bristol Uni friend – Felicity, who would likely be at home with her kids in Wimbledon, and asked her to find a way to join me back at Parkside in an hour. I didn’t really fill her in except to say that I needed an MRI at Parkside that lunch time and it hadn’t gone well when I had one 2 weeks earlier. Felic is an old friend, and without needing further explanation, she juggled what she needed to and arrived one hour later with a sleeping Ciara in the pram, ready to hold my hand through whatever it was I was I about to embark on.

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The post ‘Cornwall Heals’ will follow when it has written itself shortly, no contractions pending.