Awakey Breaky Head: Extended Edition on a “Lord of the Rings” Scale (But With No Talking Trees)

Currently, over 130 different types of ‘high grade’ (cancerous) or ‘low grade’ (non-cancerous) brain tumours are known. The treatment and care plan for each patient depends on the type, size and location of the tumour.

Here is a long-promised post about my “Awake” Craniotomy that went ahead on Halloween. I gave a short sneak preview a long time ago on 3 November but have been remiss in writing the screenplay. It took me less than 24 hours to publish a post detailing my biopsy and it’s taken over a hundred times longer to publish this. My only excuse is that I have been a bit busy since the surgery with: bits and bobs; seizures and sleeping; radiotherapy and recovery; and, chemotherapy and chameleons.*

Setting The Scene

This post broadly fits in chronologically after Wakey, Shakey, Highs and Nine but allow me to first set the scene.

Having been admitted to the QE Hospital in Gateshead when the seizures struck back on 22 October 2016, I was in the short-stay unit for just over a week before my rescheduled surgery on Halloween. (The short-stay unit is intended for patients who are expected to remain in hospital for no more than 72 hours. I was in there because there wasn’t anywhere else to put me but I feared a fine for overstaying my welcome!)

The generalist consultants who did the rounds each day stressed that they would be happy for me to stay until my surgery if that was what I needed. As the days went on, the nurses and physiotherapists kept asking me whether I felt able to go home (with the help of aids that would be provided) as they had “been asked to ask”, no doubt by some stressed ward manager trying to do the impossible and manage bed capacity and/or staffing levels across wards.

As I wrote in A Fitting End to a Difficult Day:

My biggest worry about the return of [the seizures] has been that [they] will either delay my surgery further or reduce its efficacy. On the delay front, the neurologists are not recommending a delay but the final decision is Mr H’s and he’s not back until Monday.

Hokey Cokey

As I was still having seizures, had no ability to walk unaided and was most concerned about being in the best possible position for the surgery to go ahead as planned, I kept saying that I wouldn’t feel comfortable being discharged. On Friday 28 October, a consultant whom I hadn’t seen before did the rounds and I said that I worried that my seizure the previous night might mean that my surgery would not go ahead.

I asked them to contact the RVI in Newcastle (where my surgery was scheduled) to check if there was anything to be done to increase the prospects of my surgery going ahead by reducing the seizures. The consultant agreed and the junior doctor who had accompanied her came back less than 30 minutes later to confirm that she had spoken to the RVI. Not only were the neurologists starting me on a new anti-seizure medication (clobazam), they were adamant that I should stay in hospital over the weekend before being transferred to the RVI for surgery. Double win!

Having spent most of the previous few days trying to persuade me to move out, when it came to transferring me to the RVI for surgery, the nurses seemed instead to want to keep me in! As I wrote in Long Time No…:

The ambulance … has been booked for the morning and has been told of the urgency. However, as the patient transport team can’t guarantee picking me up and/or getting me there on time, the RVI neuro team had implored the QE to ensure that I have a family member to act as a back-up…

Mr C is therefore coming here at some ridiculously early time…if the ambulance hasn’t arrived on time we can then shoot off. This is apparently not usual protocol for transfers so my nurse here at the QE had to ring “the Level 7 Sister downstairs” (sounds important) for approval (duly given).

When I mentioned to the nurse who came on night shift the plan for the morning to check she was going to be ready with discharge/transfer papers, she said that it wasn’t allowed for me to be transferred by anyone other than the ambulance team. I patiently explained that it was the RVI who had insisted I had a back-up plan as the theatre performance time-slot was booked and the Specialist team was all lined up and ready to perform.

Going back and forth with the nurse, my patience levels were clearly decreasing and she misinterpreted the source of my anxiety. She said: “don’t worry, if the ambulance doesn’t turn up on time, you won’t be blamed for missing your surgery”. I replied quite emotionally that I wasn’t worried about being blamed, I was worried about missing the surgery! When she had spoken to her supervisor (Level 7 again?) she was satisfied that the usual protocol could be relaxed. Sorted. Or so we thought.

I’ve Got a Craniotomy, Get Me Out of Here!

The next morning, D-Day, Graham turned up not long after 6am. When we asked if the nurse could check if the ambulance was on its way as otherwise we would need to set off soon to get to the RVI by 8am, the nurse agreed. It turned out that the patient transport ambulance had not been booked as we (and the nursing staff on the ward) had been led to believe because bookings apparently weren’t accepted and logged on Sundays and that an ambulance could not be guaranteed.

By this time (around 7), a different nurse had come on duty and said that she was uncomfortable with me not being transferred by ambulance… here we went again. The nurse said that she needed to check with her supervisor and then the RVI, who, of course, both told her to let me go! What a Groundhog way to start a surgical day.

The nurse said that I would still need to discharge myself as I wasn’t being transferred by an ambulance. I readily agreed to sign anything she needed me to sign (like many lawyers, I don’t read the small-print for anything outside of work!). The delay in being allowed out (just a few days after the short-stay staff were seemingly ready to bundle me out into the cold!) meant that we left the QE smack dab in the middle of rush hour at around 7.30am.

(By the way, I don’t doubt that the nurses were right to follow procedures and check with their supervisors and the RVI. It was just unfortunate, with the shift changes, that we had to have the same discussion three times!)

Pre-Flab and Conflab

Despite the late set-off, and thanks to Contingency Cole’s (legal) rally driving and lane-changing expertise, we arrived at the appropriate ward at the RVI by 8.10am, just ten minutes late. Almost immediately after registering for duty and changing into a gown, five consultants and a specialist nurse gathered around my bed.

The Famous Five:

  • Mr H (my surgeon);
  • Fran (the anaesthetist who took care of me so superbly during my biopsy);
  • a second anaesthetist – I can’t remember his name but here I will refer to him as “Mr Smiley”, as I remember him standing during the surgery with a cheerful face (but not in a weird way);
  • not in accordance with usual “Awake” surgeries, where there are always two anaesthetists on hand, a third senior anaesthetist (“Senior Dude” as I can’t remember his name either) had been drafted in for extra contingency given the heightened risk of seizures occurring during my surgery; and
  • a neurophysiologist, whose name I’ve also forgotten, explained that he would be orchestrating the tests to check, as the surgery proceeded, whether Mr H was chopping out bits of my brain that I perhaps might need.

(That they could check real-time if the surgery was having a negative effect on any part of my brain function was the reason why I was having an “Awake” Hannibal-style surgery rather than just being knocked out for the duration. On the memory front, I remember not registering the names at the time of introduction so it’s only the two consultants I’d previously met whose names I can remember now!)

Decisions, Decisions

Mr H asked about my recent seizures and the nature of them. As I hadn’t had one since Thursday night and this was Monday morning, it was long enough to go without a seizure for Mr H to say that it wasn’t out of the question for them to proceed with the surgery. He asked if I knew when a seizure was coming on, which I did at that time, and he stressed that I should tell them during the surgery if I had any inkling that I was going to have one.

Mr H asked me if I was willing to go ahead. I had no hesitation whatsoever in agreeing even with what I understood to be an increased risk of a seizure happening during the surgery. He then explained that the Famous Five would need to have a conflab to decide whether they were each happy to proceed given my seizures.

If so, they would check with HDU that there was/would be both a bed and a nurse available for me post-surgery. When bed space in HDU** was mentioned, Senior Dude said he had already been down to plead our case, to which Mr H and Fran said essentially it was a done deal because the Senior Dude had more clout than all of the others put together!

I don’t know how long I expected the conflab and confirmation to take but it was certainly longer than what seemed like the 10 minutes or so before Mr H came back to announce that we were ready to go into theatre! I quickly texted my Mam to say that I was going in and then I was carted off leaving Graham with little more than a wink and a smile!

Pre-Theatre Drinks Reception

I was wheeled into a tiny pre-theatre room where there was barely any room to swing a cat. The three anaesthetist consultants, an anaesthetist nurse and the specialist nurse were there in with me and they genuinely had to squeeze and shuffle around my bed.

Fran and Senior Dude took the lead but both had trouble with getting lines into the veins in my hands, arms, wrists and feet. Fran, who had previously had no problems with getting needles in and out of my veins and arteries, asked me half-jokingly “what have they been doing to you over there [in the QE]?!”. I mentioned the “purple glove” reaction to phenytoin (see here and here for details of that mini-drama) but that was only on my right hand and lower arm.

As my hands and feet were cold, the Drugs Cartel asked me to pump my fists to get my blood flowing. Senior Dude broke in first. I remember a bag of painkillers and a separate bag of sedatives being hooked up and then I can’t remember anything else in the pre-theatre room before I slipped into a dreamless sleep (or a sleepless delirious state?).

Action!

I quietly and softly emerged from La La Land into consciousness inside the theatre room (which was as enormous as the drinks reception area was tiny!) with Fran sitting on my left. The other two anaesthetists were standing nearby, with Smiley Dude standing closest to the IVs ready to turn the Drugs taps up and down as required. They (and the specialist nurse who was observing the surgery) remained in my view for the entirety of the surgery as I remember it. The neurophysiologist drifted in and out of my eyeline but more of him later.

As Mr H had explained to me before asking for my consent to crack open my skull once again, I was in a propped-up almost-sitting position with a sort of canopy above and around me. (For a full run-down of what I was told to expect, see the Master of my Brainiverse section of ScanMan, H-Man and the Plan.)

You’ve Been Framed!

My head had already been pinned to the frame that was bolted or otherwise affixed to the floor to keep my head (and open-air Brain) steady during the surgery. Attaching the frame is the most painful part of the procedure (and my input was not required), which is why they had drugged me up a bit with both sedatives and painkillers. I’m not sure whether or not I was conscious and talking (gibberish or otherwise) when they put my head in a frame but, either way, I can’t remember me being framed. Mr H had told me that no one has ever remembered that part but I was kind of hoping to be a trailblazer in that regard.

After checking that I was fine (which I was) and if I was in any pain (which I wasn’t), I asked Fran if my skull had been cracked open yet, to which she answered no. I chatted to Fran while Mr H and his team (a registrar called Anna and some other people that I didn’t see) were doing some more prep work behind and above me. Mr H from behind (via Fran by my side) explained that I would have a halo of injections of local anaesthetic.  I could feel the injections but it didn’t feel painful (possibly because I was already high on some painkillers!).

Not On the Straight and Narrow

While the local anaesthetic halo kicked in, Fran moved from my left to my right hand side as that would be where she would need to be to check my movement at the neurophysiologist’s instructions. Senior Dude sat down and took her place on my left. Smiley Dude remained at the end of the bed in charge of upping and downing the various bags of fluids and drugs. It was only when Fran moved to my right-hand side that I realised that I had been positioned in the frame on the theatre bed facing slightly to the left, presumably to give a better angle for Mr H to do his thing! I would have thought that, given the tumour is in the left side of my brain, it would be easier to access it if I was instead leaning to the right. As it was only my second brain surgery (and the first while I was awake), I didn’t feel I had racked up enough air miles to point this out to him!

Good Vibrations

Mr H duly cut my scalp and then used the “sort of jigsaw” to remove part of my skull that he had so memorably described in our pre-op meeting. It was weird because I could hear the sound of the jigsaw, which was not piercing, but it sounded like I was simultaneously hearing (1) a muted sound inside of my head as if I was underwater; and, (2) an echo from outside my head as if I was in a cave. I knew that he was cutting out part of my skull but it was strange that I couldn’t feel a thing except an ever-so-slight vibration.

Next, I heard the sound of the drill/saw that was used to cut through the membrane. This bit I could feel (unlike the skull removal bit). I mentioned to Fran that I could feel it and that it didn’t feel painful but she asked Mr Smiley to increase the flow on my painkillers just in case.

She’s Electric

Mr H explained that he was ready to run electrical currents through my brain. This was the bit of the operation that he was most concerned about in triggering a seizure. He had previously said something along the lines of “if I were a finger crossing kind of man, I would cross my fingers that this part doesn’t set off a seizure” as it would probably have ended the operation right there and then without any tumour being removed. Thankfully, it didn’t unleash any seizure activity and then we moved on to the real action.

Not once during the operation do I remember feeling remotely close to having a seizure. Mr H confirmed afterwards that they had not used the “Ice pack” that he had previously described (see the The Benign Prerogative in the first numbered paragraph in The Seven Z’s Awry section) or indeed any other anti-seizure steps available to them, and that it had gone well in that regard.

Lights!

Periodically throughout the operation the lights were turned off, befitting of a surgery undertaken on Halloween. Sadly, increasing atmospheric tension was not the main motivation; the lights were down so that Mr H could use the ultra sound probe to help him identify the tumour from the “normal” parts of my brain.

Frequently, Mr H would stop his cutting and partial eviction of the Squatter and check that my mobility or any other brain function hadn’t been compromised, which is where the neurophysiologist came in. To test my brain function, I had to wiggle the fingers on my right hand, squeeze Fran’s hand and slide my right foot up and down the bed, which naturally made my knee bend and straighten. There were, as I recall, no worries during the surgery about any effects on my mobility.

A couple of times, I felt like I needed to shift my left leg so moved it slightly to which Mr H said I shouldn’t move while he was noodling around in my noggin (I’m again paraphrasing). Fair point, well made: a shift of the leg here, a slight movement throughout my brain up there, with a scalpel doing its thing….it doesn’t seem like a good idea on reflection.

I remember that the neurophysiologist would frequently ask me to count up to ten. He also stood at the end of the bed many times with a flashlight that he stretched out in each direction and over his head and asked me to count the flashes. He also brought the light towards him as he stood to either side at the end of the bed and asked me to look ahead and say when the light was visible in my peripheral vision.

Camera?

In between a bit of dozing and the tests, I remember chatting to Fran and Senior Dude about this and that, including them checking my comfort and pain levels. I told them about my blog and joked that I wished I had brought my iPad into theatre so that I could do a real-time blog or, better still, record the experience on video! Fran said that they’d had the cameras in a few weeks previously. I seem to remember her saying that had been for training purposes but all I can think of now is that I could have had my very own Hannibal documentary. A “so near and yet so far” moment if ever there was one!

Non-surgery conversation that I remember includes trying to help Senior Dude think of Christmas presents for his many grown-up kids. In fact, that is the last thing I remember talking about before coming around to the hairdressing part of the performance (see below). I felt increasingly tired both mentally and physically as if my brain was slowly cranking down the gears. This mental tiredness led to me desperately trying to think of Christmas presents but not being able to offer suggestions of anything more original than the usual iPad-type gifts.

One final thing to note about the active part of the surgery is that I remember Mr H saying he needed to get the tissue off to the lab for testing. As I said in A Seizure a Day Keeps My Home Far Away, that struck me as odd at the time. It might well not have been odd, but it came to mind immediately when Mr H subsequently told us that my tumour had been “up”graded to a grade three cancerous tumour.

That’s a Wrap!

I don’t remember being told or becoming aware that the active tumour removal part of the surgery was over. Later, I was told that it was because the neurophysiologist had, through his light tricks, noted early signs that my peripheral vision was reducing. As this was a warning sign that problems would occur if the surgery continued, they decided to call it a day, sedate me again and patch me back up. Smiley Dude presumably moved very quickly on the drugs front as I don’t remember a thing!

Rachenstein

The frame had been removed while I was sedated and/or high on drugs. When I came round again, I was lying down more than I had been during the surgery but still not lying flat on my back. I was stapled 24 times on the top of my head (I didn’t count them going in but the official count occurred when they came out!), which I could feel – the pain level out of 10 was about a two.

My hair was then washed, initially by Anna but Mr H took over as he said they needed to wash it properly. (“H” is also for hairdresser? He is truly a man of many talents!) After my hairwashing, there was a discussion about plasters/bandages and the consensus was that a plaster wouldn’t actually stick to the stapled trench of freshly-shaven hair in between the wet and somewhat-matted hair. One of the surgical nurses (who I didn’t see) suggested using some form of gunk so that’s what they put on my stapled wound and didn’t dress it either by plaster or bandage.

Hannibal 2: Review

Overall, my experience and comfort during the surgery was first-class. The level of care was superb. I was calm and not scared at any time during the surgery. I’m not just putting on a brave front here many months after: I have at least six references to call on from the Famous Five and the Specialist nurse who separately confirmed this to be the case and so I’m not just relying on own my drug-induced recollections. My trust in the team was absolute and it never wavered. On the downside, none of the star performers were dressed up for Halloween except me. You can’t have everything!

The surgery itself was a success: I didn’t have a seizure during the performance, I didn’t lose any further mobility as a result of the surgery and some of the Squatter was removed. Mr H told me and Graham that he couldn’t say percentage-wise how much of the tumour he’d removed but that it was enough to create a cavity. The size of the cavity was big enough that he saw part of my brain collapse in on itself (I immediately thought of quick-sand) to fill the space formerly occupied by the parts of the Squatter that he’d successfully removed. Incidentally, I have thought of this as a “sink-hole” or “Brain Drain” ever since.

A Little Less Conversation

I immediately struggled to form thoughts after the surgery, let alone put them into words. On reflection, this had started towards the end of my surgery as I was struggling to think of alternatives to the iPads. By the time I was moved to HDU a couple of hours later (after several cups of tea and a bit of Oramorph – a good restorative cocktail), I could, in my mind, form some thoughts but they didn’t often come out in what I actually was saying.

It felt simultaneously like an inner- and outer-body experience: inside I was thinking one thing and outside I heard myself say something quite different; indeed, at times, it was the polar opposite of what I intended to say (e.g., “yes” when I meant “no”)! Graham finds it infuriating enough to argue with me, never mind when I’m arguing against myself as well!

My speech was already coming to me a lot easier by the time I left hospital in mid-November. Although I still struggle at times, particularly when I’m tired, it’s a comparatively mild issue these days as mentioned in Turn On, Tune In, Cop Out. Besides, I’ve got bigger squatters to fry….

Seized to Meet You

As I explained in Wakey, Shakey, Highs and Nine, I was very tired after the surgery for a few days. I had a seizure 20 minutes after I rolled into the Recovery Room…and they’ve been regularly occurring ever since. They were the reason why I was in hospital for just over two weeks after the surgery in an attempt to control them but that seizure saga is an ongoing theme of my posts.

Well done for making it to the end of this rather long post! Rewards might well be awarded to those who can demonstrate that they haven’t skimmed any sections by correctly answering questions to a quiz that I haven’t prepared yet. Maybe that’ll come in a few months’ time to test your memories too.

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*Chameleons have been neither involved nor harmed in my treatment to date and have been referred to for alliterative purposes only!

**Remember that the RVI’s procedures are such that, following each “Awake” craniotomy, the patient must be taken to HDU. My Awake Craney had previously been postponed as there were beds but a shortage of nurses in HDU.

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