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.
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.
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