A Blow To The Senses

** This post was originally scribbled in late September 2016.

I recently discovered I have no sense of smell. Weird, I know, how could I not have noticed? I knew in hospital my sense of taste was off as nothing tasted quite right and I had a constant taste of pepper on my tongue. This persisted for weeks but I have now, slowly, begun to differentiate some flavours. Whilst it makes tasting what I cook somewhat risky, thankfully, I can still taste chocolate, so it’s not a complete disaster.

As to discovering the loss of my smell-ability, that came whilst mum and I were taking a stroll outside and spotted a bush resembling lavender. I mentioned that there was a plant here that looks like lavender but isn’t. Reaching over I ran the flowers through my hand to capture their bouquet, sniffed my hand and stated there was no smell and it mustn’t be lavender. Mother, being ever so believing, reached over for her own test, turned to me with a quizzical face, offering her hand to me, saying, “Yes, it is lavender”.

Confusion ran through me as I ran my hand over the flowers and tried again, expecting to smell lavender this time, thinking that somehow I must not have been paying attention the first time but again, I could smell nothing.

Resuming our walk, I tried to make sense of it. I knew what the flowers should smell like but nothing registered in my brain when I tried to smell them, it was as though there was a blank in place of scent.

Upon returning home, we began a sniff-athon, testing my nose against a range of smells; we tried perfume, my favourite incense, and coffee grounds, all with strong and easily recognisable aromas, yet nothing registered for me.

Concerned, I contacted the lead Nurse Practitioner (NP) of the surgeon’s team to ask how long I should expect it to last. After consulting with my surgeon, she informed me it is unlikely to recover; that’s right, unlikely.

As the realisation of this information sinks in, I am brimming with sadness and a sense of capitulation. Where’s the bloody white flag?

My conversation with the NP went like this:

Me:

“You may recall that I lost my sense of taste after the op, whilst that has improved slightly, I have realised I also lost my sense of smell. Anyway, I figured this is probably one of those things that should resolve over time but wanted to check.  I mean whilst I don’t mind having to pass on the job of checking if food is off by sniffing it, it is impacting me.” Note my complete lack of understanding as to what had occurred.

Nurse Practitioner:

“I wanted (surgeon’s) opinion too. Seems unlikely that it will improve, but need to give it up to 18-24 months to be certain.”

Me:

“I find myself shocked at the idea that the loss of smell and changed sense of taste may be permanent.  I understand that with time things may improve as I’ve been through that with my stroke deficits.  I guess the question I have now is, how did this happen?

Nurse Practitioner:

…“Anytime you manipulate the olfactory bulb (on the under surface of the frontal lobe) you can loose sense of smell from that side; there is one on the under surface of each frontal lobe. So if you lost the right one from the previous surgery, you had the other one that still worked. When we went in on the other side, that manipulation may have taken out the other one, causing loss of smell as the other one was already gone.  These are such sensitive structures…I know it’s not what you want to hear.”

The idea of having brain surgery is daunting, due largely to the possible complications. I know that when the doctors rattle off the standard list – bleeding, stroke, loss of limb function, change of personality, death, I generally can’t be objective about it. The death part doesn’t worry me anywhere as much as possible stroke and brain injury, as having had a stroke, I have an intimate understanding of what that means and it ain’t much fun; but sign the consent forms I do and trust to the steady hands of my surgeons, knowing there are no guarantees.

With each of my craniotomies, there have been unexpected outcomes and I’ve worked really hard to deal with that, manage around new limitations as best I can and investigate therapies that may offer some help. This time despite a very experienced surgeon, my left olfactory bulb was damaged perhaps irreversibly (and with hindsight, I now also know the first surgeon damaged the right one). With it goes my ability to smell anything) including burning toast, gas leaks or food of any kind) and with smell affected, so is my ability to taste. It makes flavour checking something I’m cooking a huge challenge and knowing if food is spoiled – well, that’s a whole other adventure!

I live in hope that my brain will heal and that little bulb will one day soon start to fire up and send out it’s oh, so important signals. It is with this vehement hope in mind, that has me continuing to sniff things, attempting to keep the pathways between nose and brain working.

It may seem to be a trivial sense to lose but for me it has been deeply upsetting. As someone for whom cooking, baking and eating good food bring enormous pleasure, it has impacted the very heart of me. My place of solace has always been the kitchen and now half the picture is missing.

 

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Imagine  not being able to smell or taste your favourite foods.

Honesty and Fear

I feel as though I haven’t been entirely honest about my recovery and it bothers me, which is a bit odd because all of us choose what information, we share about ourselves, particularly when it comes to something personal and scary like a health crisis.

The moment I decided to write a blog about my first brain surgery, I opened the door and invited friends, family and even strangers into my home, life and mind. That’s the thing about blogging, when your topic is your own health and some crises you’re facing, the writing is naturally going to be personal or it won’t be worth reading for anyone; I certainly found it was the only way I could write, exposing the truth be that good or bad.

This time around, I haven’t had the courage or perhaps that’s being a bit hard on myself – I honestly don’t know if my inability (or unwillingness) to write and share what I’ve been living is because I’m afraid to sound weak in front of people who have come to expect bravery of me or if the lack of words stems indeed from changes in my brain resulting from this last surgery.

Out The Other Side

Firstly let me start with the reassurance that I am alive and well after my brain surgery. I am very conscious that it is now past the eight week mark and I am yet to write anything about it. I have been pondering how easy it was to write after the first operation compared to this time and it seems the main difference is pain management. I was in loads of pain last time and as many of you will understand, pain can serve well as a writer’s motivation. In all seriousness, the surgery went very well but I have been so high on pain medications that most tasks of ordinary life have been beyond me. I also find myself living with profound tiredness, leaving my day’s routine to mostly sleeping, couch rest and general zombie-like house wandering. Living the dream!

Fortunately, I have in the past week or so been able to reduce the number of lovely drugs needed to tame the pain so am beginning to have a few lucid moments. Now being one of them.

So a quick update; the surgeon was very pleased with how his work went; he was able to clip the original aneurysm and the second small one from the left hand side of my skull. img_4894He also reopened the incision from the previous surgery (right side), cleaned it up a bit, removed the hardware (metal brackets and screws) left to secure the skull flap whilst it healed and filled in a depression (possibly caused by muscle atrophy since the surgery) with bone cement.

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I had asked if he could do a facelift whilst he was at it, but alas, no. By removing the metal, we are hoping for a reduction in migraines, as it is the medical opinion here that they were likely a trigger. Unlike my doctor in Australia whose sage words were, “The migraines might just be the new you after surgery”. End of advice!

I can report several improvements already in this area, with the constant jaw pain I have had since the first surgery vanishing. Additionally, the tender spots where the metal was are no longer sore. Whilst I am still experiencing localised pain at the incision, I am hopeful that as it heals, there will be further improvement.

 

Now immediately after this op, I was apparently very ill upon waking and as my beloved and devoted husband tells me, “You were puking for hours”.   Thankfully I was so out of it I have absolutely no memory of this or of being in any pain for my entire six-day hospital stay. There are plenty of other things I also don’t remember but I’ll save that for later.

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I had a slightly longer than expected stay in hospital, largely due to having several strange episodes which were initially suspected strokes. They were not, happily, thankfully, get down on my knees and thank all deities, not. During these episodes my speech became garbled or I ceased being able to get my words out, then as speech returned, it was painfully slow and I had difficulty forming words. This is called aphasia and apraxia. I experienced something similar after my stroke in 2007 but not with the same intensity.

The first two times I had an episode, the staff called a Stroke Code, which involved a team of health professionals rushing to my room, asking loads of questions, whilst taking blood, physically examining me, ordering tests and rushing me to Imaging. You may think that sounds awful, perhaps even a little frightening, and yes, had I not been stoned out of my head on pain medications, it might have been. In less than 30 minutes, I was assessed, put through the CAT scan and returned to my room, I also had an MRI. This hospital takes the possibility of stroke seriously, as I wish all hospitals would.

img_4817The initial diagnoses was that swelling near the speech centre of my brain was causing seizures, so I was then connected to an EEG machine overnight to see if they could ‘capture’ evidence of one. I did have an episode whilst hooked up but the EEG didn’t capture anything. This meant it was either migraine related or the seizure activity was too deep within my brain for the EEG to detect; (I know, I know, my head’s too dense for the machine to penetrate). As a precaution I am on anti-seizure medications for a few months. As for the other possible explanation of migraine – the surgery may have set off a new type of migraine symptom for me. I have continued to have a couple of episodes a week since coming home but we are hopeful it will resolve itself as I heal and my brain stops having a tantrum at being interfered with. I see my Neurologist this week when I am sure this will be discussed.

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Jason has been super busy looking after me, managing my medications routine and generally keeping me on track. My mum has come over from Australia to help out and allow Jason to return to work. We were kept well fed by our community here using the Meal-Train website, which worked perfectly for our needs. My incisions are healing well, my pain is slowly lessening and I am beginning to do more. Both the surgery and recovery this time are 100 times better than my previous experience.

All in all, I received excellent care from the team at University of Colorado Hospital and much love and support from our families and friends.  I am extremely thankful.

Emotional Turbulence

With only two more sleeps to go, nervousness has reared its unpleasant head. Despite using the tools I have such as meditation, to keep it from becoming full-blown anxiety, I still have stomach butterflies appearing at frequent intervals (coupled with just a smidgen of nausea) and an almost overwhelming desire to RUN.

As much as I try to think about others in more difficult circumstances, in an attempt to tamp down these feelings with a wider perspective, I’m unable to shake a certain growing dread of what’s about to come.

Logical thoughts like ‘It’s for my benefit’ or ‘I need to do this’ are ringing empty today. I feel as though I’m about to walk through a door where I know I will experience pain and unpleasantness, but then step into the unknown. The only thing that I think I know about this mystery stage is that I will temporarily lose my independence (again) and will have to live each day in accordance with my body’s new limits and spend most of my time managing pain.

This is a difficult thing to walk into willingly but walk I must and deal with whatever comes, hopefully with some grace.  It helps to know that the people I care about and who love me are holding my hand and sending me uplifting thoughts.

Vulnerability and Connection

This thing, the human condition lets say, is a shared experience and opening up about my struggles often allows or encourages others to do the same.  In this way, I believe we help one another to carry the burden, to understand we are not alone in our travails and that there is hope for better days.

Exposing oneself is not an easy thing to do but my experience has shown that being vulnerable in difficult times, opening up about the things that frighten me, gives an opportunity for others to be kind, show unwavering support, surprise me with the depth of their love or friendship and to remind me there is grace to be had, there are safe places to reside when the pain becomes too strong and even, occasionally, laughter still to be shared.

I am astounded by the cocoon of wellbeing I have found myself woven tightly within by people far and near, those known for years (even decades for some) and those only recently met.

To be filled with gratitude at a time when I thought I’d be terrified is a marvellous thing.

Thank you.

Vaguely Human

I’ve been reflecting on how much better I have felt these past couple of weeks. I haven’t woken with a headache in a while and although I am still on slow release morphine morning and night, I can now go three hours each morning before needing any acute pain relief.  My use of Endone (more morphine) has all but ceased, leading to a clearing of my mind and lifting of paralysing lethargy.  I am beginning to feel much more like me again and perhaps even vaguely human!

Thanks to having more energy I can contribute around the house in a more meaningful way.  Jobs like un-stacking the dishwasher are now possible, as the intensity of the pain in my head when bending down has lessened greatly.

There are still mornings when I wake with swelling around my right eye but it generally resolves as I move about throughout the day.  The pesky double vision visits me most frequently at night when I am tired; and while my daytime vision is good, there are still limits on how long I can read or write, although it has increased much farther than the 10-minute mark of early days.  Jason knows it is past time for me to be in bed when he notices I am holding one eye closed while watching T.V.  It’s a ‘tell’ I hope to lose soon, although it does serve as a definitive signal of fatigue.

Driving has been restored to me with the okay from my doctor. I am sure you can understand if I take a moment to shout ‘Independence is mine’.  The timing was helpful as the financial pressure from me not bringing home any pay for five and half months was making taxis a luxury we could no longer support.  My first few outings, I was acutely aware of how long it had been since I drove and took it slow and very easy.  I can say happily that driving has become more natural again but as a precaution, I still take my time checking for traffic and ensuring my decisions are not rushed. Whenever I head out, I am thankful to live in a small town with small town traffic.

My head is clearing relative to the slow but steady reduction of pain meds and my doctor thinks I could be off everything by the end of the year.  Over coffee recently with a former boss, now friend, I was asked what am I working towards in the next few months and after a short pause I told her that, “I would very much like to enjoy a glass of champagne on Christmas Day (having not drunk alcohol since April) and another on New Years Eve so I can fondly say farewell to 2014”, a year that will now always be the year I had brain surgery. What’s that saying? What doesn’t kill you makes you stronger.  I think I must have that tattooed on my arse or somewhere else I can’t see, you know, like a birthmark.

I am noticing other improvements as the weeks slide by and am thankful that my hair has stopped falling out and breaking at the slightest touch. With hair long enough to get caught in my armpits (why did no one warn me when I said I’m growing my hair?).  Anyway, with long hair that continually shed, a house with all tile floors, it’s safe to say we’ve had Veraina tumble weeds rolling about the place. Thankfully it appears to have slowed.  I recall how freaked out I was when my hair was first washed after surgery (by a lovely nurse who regaled me with stories of the annual spiritual (and boozing) retreats she organises).  As she began rinsing my head a couple of clots of blood and hair came off from the points where they drill into your scalp to hold the head still during surgery. Ewww!! Even more came away when we combed it. I lost tons of hair in the first few months, thankfully not enough to be noticeable to others.  It was a result of the stress upon my body, the anaesthetic and other drugs etc.  My appointment with the hairdresser sadly had to be cancelled as my scalp and scar were still too tender but I think next month’s the charm. This is the longest break I think I’ve had from getting my hair coloured. It has proven a trifling entertainment to rediscover my natural colour.  It’s a little sparklier under bright lights than I remember.

So, as the improvements roll on through, I have enjoyed my first few days with pain-free hours, no icepack on the head for break through pain, no waking in the middle of the night because I’ve been resting on my scar for too long and no ice pick stabbing pains in my skull.  Yes, I still need to medicate when the headache seeps back in, to prevent it from becoming a migraine, but the intensity is nowhere near what it was.  I do still occasionally get the electric-spider-dance pain across my forehead but I have found rubbing the skin furiously works well in dealing with that. And thankfully, the whole ingrown hair torment seems resolved, although I have leant the important lesson of getting a promise from Jason before he ‘looks’ at my scar, that there will be no squeezing without explicit consent.

Speaking of scars, mine has healed remarkably well and with the hair growing back, it cannot be seen without close inspection. I had thought it would be visible should I have short hair again, but it wont.  My surgeon did an incredible job keeping the entire scar within my hairline.

In feeling more human I have had a tentative peek at a full recovery.  I can for the first time, see the end in sight.  Five months isn’t really a lot of time but being in pain and a drug fog, stumbling about trying to rehabilitate, it has at times certainly felt like a long time.

I read a passage today that spoke to me about dealing with adversity.

“Even the worse things can exude some lightness: Yes, this is terrible, this is not what I wanted, not what I’d hoped for, not what I’d worked for, maybe even what I feared. But also it’s not that bad. It is like a dream. It’s happening and not happening. Soon it will be in the past. So I can look at it differently, I don’t need to validate all these dire thoughts that only make matters worse. Maybe I don’t need to be so worked up about it. Maybe I can just figure out how to deal with it without that extra measure of anxiety and freak-out.” Training in Compassion by Norman Fischer

I certainly indulged in a fair bit of freak out in the beginning of this journey but in the end, despite brain surgery being the scariest thing I have faced, I turned up and did what I had to in order to keep living.  I worked hard at rehab, have struggled with the side effects of medicines but have, with lots of love and support begun to find my way out, my way out of the dream. The surgery is in the past as is most of the pain associated with it.  I can now turn and face the future while residing in the present; there is after all, still work to be done today, so I may reach my best ever recovery and future.

Perspective or Thank Goodness The Vomiting Stopped

I have been feeling a little ‘off’ the past day or so.  Nothing I can really point to except perhaps a lack of energy or interest in anything, perhaps a bit dizzier than usual.  I mention this to Jason who reminds me it is to be expected occasionally and to just take it slow.  My internal reaction to his sage words, tells me that despite not feeling great, I must be getting better.  My reaction is of the, bah-humbug sort and I realise I am a bit ‘over’ recovery and it’s myriad of symptoms and limitations.

This morning however, I was flicking through some of the notes I scribbled whilst in hospital last month and I found the piece below. It spoke to me deeply as to what I have been through, how well I really am doing and helped me remember that with enough time, healing will be done. I thought I would share it so as to provide a glimpse of the stages of my recovery.

Hospital Journal – 8 June

I wake with a pounding head and am given some Panadeine Forte. I settle back with my ‘Distancing Yourself from Discomfort’ meditation, slip an eye mask over my face and an icepack between my head and pillow. I am comfortable, momentarily. Nausea quickly strikes and I am again reaching for a vomit bag, as I go from saliva-mouth to upchuck in seconds. I breathe deeply attempting to settle it and buzz for the nurse. It’s still morning medicines and observations rounds so no one comes. I am sick again and am trying hard to stop, as I don’t want to lose all my tablets. As vile as it sounds, I have already identified a few floating in the sick bag and can’t lose any more, as they wont be re-administered. After what feels like an eternity, the nurse rushes in to check on me, swaps my bag for a fresh one and gets something for the nausea.

My stomach settles slowly and I reflect on how poorly I feel. It’s only a week since the surgery and I am already fed up with being stuck in this bed, this room, and this hospital. I am literally sick and tired of the persistent pain in my head, this awful double vision and horrible dizziness.

Whilst I know things could be so much worse, it is small comfort at the moment. As soon as I wake each day, the first thing I am aware of is the aching and stabbing pain in my head; to call it a headache does not do it justice. I spend my days surfing waves of pain. I zig and zag between pain, dizziness, fatigue and nausea. Today, frankly, I am over it.

I know it will improve and that recovery requires time, rest and discipline.  Right now though, I would just like to have one better day; one day of  reduced pain and illness to give me a light to follow, a hope to cling to and to remind me that I am healing and improving.  (end)

To read this a month later when I am again having a moment of feeling ‘stuck’ in recovery is insightful. It was only weeks ago that I had a really serious operation and was dreadfully ill. I remember the days I was writing about in the above, reaching such a wretched point where I had been vomiting on and off for hours and with every retch, my right eye felt as though it may well burst its socket; not to mention the pain the pressure from vomiting caused my head. It was at this point that I told Jason I didn’t think I could tolerate the pain much longer.  I was desperate and despairing. We both begged the nurses to do something to help me and eventually the senior nurse called the on duty doctor from the Intensive Care Unit.  Seeing my wretched state and realising that Panadeine Forte was the equivalent of a Tic-Tac in treating post craniotomy pain, ordered intravenous fluids (to combat dehydration brought on from days of vomiting) and effective pain relieving medicines. It had taken several horrendous days but thankfully, my pain was being better managed and miraculously, I stopped vomiting.

Even though I am still uncomfortable and occasionally frustrated by my current limitations, reading the above puts my recovery into context and I accept that this is where I am right now.  I have come a long way in a short time and in another week, I will be better again.  Knowing this makes being here, a lot easier.