Random Hospital Memory

Someone had brought pretzels for the ward and the night staff were particularly fond of them. For a while there the nurses doing my two hourly obs all had garlic breath. It got to the point where I was starting to wonder whether I was also experiencing scent hallucinations.

Rehab

Well, I don't know how quickly I thought this whole recovery thing was going to go. I mean, I've had shunt revision surgery before, but not for nearly 15 years, and an endoscopic third ventriculostomy is a whole different beast. How long is it really supposed to take for someone to recover from having a hole drilled in their head, and a probe stuck into their brain to make another hole in there?

What I can tell you is that I've been tired - much more tired than I expected. Thankfully I haven't had too much disassociation. I guess the change in brain pressure from a ventriculostomy is more subtle than a shunt revision, and my brain didn't freak out too badly. However it has become clear to me that I really wasn't that with it before the actual operation. Hamish reminded me that I'd had a CAT scan and x-ray the night I was admitted to hospital (I could only remember the CAT scan). He also reminded me that he was there for both of them. I even had to ask whether he was there when the neurosurgeon was discussing whether to install another shunt, or whether to do the endoscopic procedure. I'm glad he was, as he's been able to reassure me that I went with the surgeon's preferred option. I'd started thinking that the surgeon actually wanted to put another shunt in, and that the ventriculostomy was something I'd pushed for.

I really wasn't myself for those first couple of days after the surgery. I felt overwhelmingly grateful to everyone who was so supportive to me, but I had to deal with a bit of guilt and dented pride, feeling like I'd become a bit of an overanxious, whining nuisance. Of course the nurses are used to dealing with far worse than me, but I wanted them to know that I'm normally a lot more rational. Stupid woman - you just had brain surgery. Of course you're allowed to lose a little perspective!

In the aftermath I've been dealing mainly with neck and shoulder issues, which were brought on by having to lie flat for two days and lifting my head off the pillow in an attempt to eat. I didn't have a headache as such, but my head felt really tight and standing up was causing my blood to pound in my head. In my more paranoid moments I was worried this meant there was still something wrong, and that the operation had somehow been a failure. I spent too much time reading up on ventriculostomy failure rates and ended up having to tear myself away. It was this tightness, as much as the actual surgery, which was causing me to feel so worn out.

In my defence, I didn't exactly take the weekend quietly. I got up on Saturday morning and went grocery shopping (one week post-procedure), and then Hamish and I went shopping for a new bathroom vanity and taps. I rested up that afternoon, but on Saturday night we walked down the hill to visit friends at their new house. I drank several glasses of wine then walked back up the hill again.

I'm finding that my sleep patterns are still a bit disturbed, and Saturday night was a good example. The tightness in my head bothered me to distraction. I couldn't relax and got maybe a couple of hours maximum. It took a big dose of Hydrocortisone and a long hot shower to get me moving the next morning.

On Sunday I drove Hamish to Paraparaumu for a glider flight. The weather was perfect and he escaped without air sickness, even flying the glider himself. He landed with a huge grin on his face and it was nice to do something for him after putting him through so much stress. Now both of us have expensive hobbies ...

We followed that up with lunch at a beachside cafe, then returned home where I felt unable to rest. Instead I headed out into the garden for an hour or so, and only after that did I allow myself to crash. Thankfully I did at least sleep well.

On Monday the weather changed and it was cold and wet as I made my way to my office for morning tea. My neck and shoulders were still bothering me, the tightness in my head in particular an issue. It was great to be back at work for a while but catching up with everyone was overwhelming. I had optimistically taken a gym bag with me in the hope of sitting on a stationary bike for a while. Instead I headed straight back home again. I put a DVD on and snuggled up under a duvet on the sofa, but fell asleep a few minutes in and woke as it was finishing.

It was only then that I think I really accepted recovery was going to take a little while. I fell asleep quite quickly last night but spent an hour or so in the middle of the night tossing and turning. I made an appointment with my physio as soon as her office opened. A few good cracks of my back later and some gentle kneading of my neck and I was feeling more human. It was becoming clear that the strange head sensations were indeed neck and shoulder tension and not a sign of anything more ominous.

I've taken it easy all afternoon. I have no plans for tomorrow, and although I've said I'll head into work for a few hours on Thursday if it feels too much I'll head home again. As much as it kills me I think any form of workout is going to have to wait till next week. This resting stuff is hard!

In which normal transmission is postponed by a bit of neurosurgery

Well, without wanting to sound too dramatic, I have been in hospital this week. I got home yesterday and am still trying to fully comprehend the last few months! Well, obviously I went silent on the blogging front and part of that was that it all just got too hard. The marathon went well, then there were the two disastrous half marathons, followed by an awful 80km cycle race in Featherston. It was cold, wet and very windy. I cycled most of the way on my own, got poured on, hailed on, finished ten minutes slower than I did last year, and injured my back. I spent the last 15k in excruciating pain, wanting badly to just stop and let the SAG wagon pick me up.

After the horrid race I got a cold which knocked me out for another couple of weeks, during which time my back refused to settle. I got the physio's permission to try the next race on the Taupo lead-up schedule, a four-loop 100k'er in Waikanae which was mostly flat. In the end I made it round one loop, with the back injury taking all the power out of my legs. I didn't have it in me mentally to keep going as I watched pack after pack fly past me.

At the same time I was battling more hormonal issues. My doctor and I suspected I was going through premature menopause, so I came off the pill so we could really see what was going on. I'd been blaming the poor training and the roller coaster of emotions on that. However over the last month it felt more like depression. I couldn't run because of my back, I couldn't seem to cycle for peanuts, I lost my appetite so was eating crap in an attempt to just enjoy eating SOMETHING, and my swimming wasn't going to be ready for the Rotorua half Ironman. In fact, my bike form was so dire that I even doubted I'd be getting around the Taupo Cycle Challenge.

To make it worse I then started suffering from increasing migraines. I spent Labour weekend on the sofa with no energy to do anything, with my head pounding, kicking myself for not cleaning our untidy house or running or cycling. Jo and I had been planning a Rimutaka incline run but I was in no state, and the Gearshifters had headed out to Paekak hill without me after I failed to keep up with even the slowest riders (having the day before finished second to last in the time trial).

I battled my way through work this week but by Wednesday night it was fairly clear there was something more ominous going on. I wanted to get through Thursday before heading off to hospital. I had to sit in on two interview panels and the Immigration Bill was due to go through its third reading. I didn't want to miss the event I'd been working towards for nearly four years, and I didn't want to miss celebratory drinks! I somehow made it through the interviews but twenty minutes into the third reading my workmates were bundling me into a cab and I was off to the A & E. Six hours in the waiting room in horrendous pain (nearly crying each time they called out someone else's name), then six hours out the back, where I at least had a cubicle for most of it, I finally made it onto a ward at 3am.

By way of explanation, on top of my four autoimmune disorders (Addison's Disease, Hypothyroidism, Pernicious Anaemia and Premature Ovarian Failure) I also have Hydrocephalus, or water on the brain. I was diagnosed at six months, had a shunt inserted to drain the cerebrospinal fluid, and managed to live a fairly normal life after that. I've been lucky in that the shunt remained unblocked for nearly 15 years. However it seemed my luck was finally over. The increasing buildup of cerebrospinal fluid in my head was causing a rise in intracranial pressure, horrific headaches and nausea. I was not in a good way!

I spent the next day waiting for surgery that never came, on nil-by-mouth and a drip, and then most of the next day as well. By the end of the next day the intracranial pressure had increased to the point where I was sleeping most of the time anyway. Finally I had the operation. I thought I'd just be getting the shunt repaired, but the surgeon recommended an endoscopic third ventriculostomy (slight crustiness warning). This meant that they drilled a hole in my skull and inserted a probe through my brain and actually made a hole in the wall of one of my ventricles to enable the fluid to drain away more naturally. The video I've linked to above shows the probe being inserted into a guy's skull and the hole being made in the ventrical. It explains the procedure quite well.

Because they'd actually made a hole in my brain I had to spent another couple of days completely flat. It wasn't a particularly pleasant time. The change in brain pressure caused the poor organ to freak out a bit so that I apparently didn't always make a lot of sense, and I had a reaction to the Tramadol I was on. I had some extremely unpleasant auditory hallucinations. It sounded for all the world like there were flies buzzing around in my head. Plus I was on such a high dose of my cortisol medication post-surgery that I was completely unable to sleep.

Thankfully my cortisol medication was dropped just enough to finally enable me to get a little sleep. I also took myself off the Tramadol and the hallucinations gradually eased. To my surprise I was hauled off for another CT scan which showed the procedure seemed to be working and my ventricles were returning to a normal size. With no signs of any brain bleed I was slowly allowed up and, with the exception of a brief vertigo attack, I was able to convince the physio and occupational therapist to let me go home. Question from the physio "So, what kind of activity do you usually do?" My response: "OK, really?" followed by a brief description. He decided I'd probably be fine after that! I mean I was at the gym doing shuttle runs and burpees the night before I was admitted to hospital FFS! And yes, hello stupid!

So now I'm home with seven clips in my skull and some reducing brain-pressure related disassociation. All things considered I'm feeling remarkably good. However obviously the Taupo Cycle Challenge is off, Rotorua is off. I'm feeling bad about being so hard on myself over the last few weeks when there was obviously something wrong. I don't know how many months my shunt's been blocked, as the pressure builds up gradually so it could have been affecting my training for some time. All I know is that it's good to know I came second to last in our time trial for a reason!

My plans now ... well, I don't think I should really have any because I have no idea how long I'm going to take to return to normal. I just wish I could have the very cute hospital physio as my very own to develop my comeback plan! I think I should probably just take the next couple of months to get better and enjoy myself and slowly rebuild the muscle I lost lying around in bed not eating. Sigh!

I'm feeling so much better that I'm contemplating a little time on a stationary bike next week, and then some walking with a little running thrown in after that. I'll get a PT to throw a rehab weights programme together for me so that I don't completely lose my muscle. Once the wound in my head heals I'll be back in the pool a fair bit I think.

So, well, that's my life! How's everyone else?! Mike - planning to travel to Welly for that U2 concert? :)

Now that I'm back you'll probably be getting reasonably regular updates on my rehab. I have a new pink pair of MiAdidas and a cute pink and grey 2XU set of trishorts and singlets to try out, so you can bet I'll be wanting to get some use from them!

An Email Exchange

On Thurs, Oct 7, 2009 at 9.05 A.M, [Pip] wrote:

I may have just died and gone to heaven
Though it would be a Leo-style "must have more, can't have more,
must have more" kinda heaven ...
http://www.pimpthatsnack.com/project/302/1
Pip

[Note: Leo was a friend's cat who was notorious for his inability to stop eating until his plate was clean, even if that plate was a bowl of melted icecream with chocolate sauce]

Husband:

and only 10,000 calories! :) (How many circuits of Taupo is that?)

Pip:

Er, that's about three times around the lake. No worries!

Leonie:

yeah Hamish, Pip can do that BEFORE breakfast, then go back and run it twice before lunch!

Nic:

But would she have the mega-egg for breakfast (between the cycle and the runs) or before? or after?
and how many times could she so around if she put 10 shots of espresso in it?

[Note: I'm also notorious for my extreme reaction to caffeine]

Pip:

Definitely not for breakfast- too much sugar and it would cause serious gastro issues! I'm contemplating whether it would be possible to pour some of the fondant into the feedbag on my top tube, every now and then reaching in and scooping some out instead of sucking down gels on the bike. The chocolate would melt in my shirt pockets, and that would just be nasty. For similar reasons it wouldn't be terribly portable on the run, but I imagine that, combined with a little chocolate milk, the egg would make a great recovery meal.

Give a calorie intake target of only around 200 calories per hour during exercise though, and even allowing for around 600 calories of recovery meal intake, there'd still be plenty of egg left over for my supporters!

And I'm now wondering how I ever wound up in a universe where I sit at my desk on a Thurday morning calculating calories burned during exercise versus the calorific contents of a giant Cadbury crème egg and its nutritional value.

Pip: (a few minutes later)

Thinking about it, I'd probably be able to add 5k per hour in speed on the bike per shot of coffee, and drop 30 seconds per kilometre on the run (these are genuine calculations, btw). I'm sure if I thought about it I could calculate the reduced calories burned as a result of the reduced exercise time resulting from the coffee intake, but I should really stop now and get some work done ...

Leonie:

Picture me LMAO right now

Another Poem

I'm having a bit of a rethink about the direction of this blog. I'm toying with the idea of leaving Blogger for greener shores, and broadening out the scope of my posts. If I do so then I'll be making a commitment to post more often and more widely. I'll finally get around to creating that blog roll and I'll be posting on a variety of topics. If I decide to make the switch I'll start posting more commentary and more links to other sites. There'll still be the training posts most of you read this blog for at the moment. However there will also be a return to more regular poetry posts. If I get my act together I'll be posting on the issues that are important to me, and I'll be posting on daily life and happenings here in Wellington.

In the meantime, here's another (still very draft) poem! This was inspired a few weeks back by a news article stating that the current government is looking at loosening up the rules around overseas investment in New Zealand.

That Which Was Ours

They came across the border
when our eyes were averted,
too busy looking inwards
to notice the attack from outside.

They took us on the beaches
first of all, our defences weak,
their firepower stronger.

While we were still dusting the
sand from our arms and gathering
together the possessions we had
clutched to ourselves as we
scrambled to retreat they
turned on our utilities.

Before we knew it our
water and our power
were no longer our own,
left begging at the
doors of strangers to
cook our last suppers,
scraping together cash
to pay for enough light
to see as we tucked our
children into their beds.

But it will all be ok, they
crooned to us, as we lined up
to fill buckets so we could
heat water for our weekly baths.
You see, things are more efficient
this way. Your dollars
are still your own.

So we sat on cliff tops
looking down at the waves below
us while we sipped on Pepsi and
Bud, unable to afford to drink
what used to flow freely from
our taps. We kept bees for
the wax and felled trees from
the local reserve
for firewood.

That which was what ours
was not truly quantified
until it was listed on the
asset sheets of those that
came.

It's all about performance

You know you're a cycling geek when you find yourself laughing hysterically at a video like this! Although I had a few twinges of feminist guilt at doing so ...

Anyway, funnily enough it IS all about performance. At least, it's all about this Sunday. If certain other Wellington bloggers hadn't already posted their own ambitious goals (you know who you are) I wouldn't be feeling my own performance angst. It doesn't help that my last race attempt was a dismal failure.

So, the game plan is to just go out there and run the race that plays out on the day. That could mean just finishing, or it could mean hardening up and sprinting it. I have no idea! My training has been more consistent this time around and I'm feeling more tapered. I ran a good solid 6km on Tuesday at a pace Dave thinks I can maintain, and 4km today at what was supposed to be easy, but was a bit faster than that. However ....

Anyway, it's not like I can do anything now other than continue to try to put myself in the right frame of mind.

Inspiration

A Poem

Because it's been a while. This poem was a response to a Read Write Poem prompt. I have also recently written a second poem, a response to an article on the current government's plans to open up international investment regulations. Unfortunately I thought I'd emailed to my hoe address, but apparently not. Posting it will have to wait for another day. Neither are my best work, but it was so good to be putting pen to paper again that I think it's still worth having them online.

Spooky

When the cancer

spread to his brain he

began seeing five cent

coins on the floor.

My uncle spent hours

on all fours groping around

for the invisible currency,

keeping him happy.

After he died the same

coins materialised

in the corners of

our bedrooms and

sat gleaming on

our desks, shelves and

coffee tables,

gleaming in the

twilight, winking up

at us from the floor.