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.

Glad Tidings

Happy New Year to you and those you love. May 2017 be filled with good health and contentment for us all.

It’s natural at the end of the year or early in a new one, I think to reflect a little on how life has been treating us, and vice-versa. Its no secret that 2016 held a few difficult times for me as I grappled with needing another craniotomy and then the actual recovery; but as I have looked back at this past year, I’ve found myself feeling quite happy. Yes, there were some very real hurdles to overcome but largely it was a good year.

I mentioned this to Jason yesterday and he said he felt the same way, that in amongst it all, we have seen and done lots of fun and new things and his overall impression of 2016 was also a good one.

I think sometimes it’s too easy to write off a year due to one or two ‘bad’ events or situations. In 2016 we enjoyed two interstate road trips, saw many interesting and beautiful places, continued to develop our new found friendships with the people sharing our Denver journey, had a week’s holiday in Mexico, established ourselves as ‘locals’ at the nearby brewery, connected closely with our friends and family around my surgery, have been to see lots of new movies at the cinema as they are so inexpensive here, learnt new skills, survived our first blizzard (I stayed indoors and refused to stick even a nose out the door), became Great-Aunt and Uncle as we welcomed two baby girls into the family and settled into our new life in Denver.

All in all, not bad when you consider I had brain surgery mid-year!

Here’s to a wonderful 2017 for us all.

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.

Specialist Review

Sitting in a tiny consult room in a dingy corner of the Outpatient’s Clinic at the Alice Springs Hospital, I tell my surgeon it’s nice to see her without having to catch a plane and fly interstate.  She smiles.  “How are you coming along?” “Good,” I say.  I know she is itching to look at the scar so I pull back my hair at the fringe and side and let her examine her handy work.  Content it is healing well, she returns to her seat.  I neglect to tell her that I keep catching the scab at the top of the incision with my comb (yes, the same way I pulled out a stitch).  Before she can change the subject, I make a point of thanking her for such a neat incision.  She shrugs this compliment off.  I imagine doing neat incisions is the easiest thing in the world for a neurosurgeon.  I then tell her the nurses were very impressed and constantly marveled at how much hair she saved (as opposed to shaved).   It appears she didn’t anticipate this comment and smiles whilst looking a little bashful.

We chat about headaches, swelling, and pain medications.  She reassures me that the headaches will continue to improve as will the swelling, although she does stop to have a gently poke at the side of my face where the puffiness is most obvious.  I tell her I have returned to icing it, which should help, and after a two night trial of sleeping flat and an associated increase in pain and swelling, have returned to sleeping upright.

I wonder then how long it will take for her to mention the ‘elephant in the room’, the patch over my right eye.

In hospital, Dr. Harding was vehement that my surgery was textbook with no complications (which it was).  However, she eventually acknowledged that it was possible that my post-stroke symptoms would be exacerbated by the surgery; but was steadfast in her position that she hadn’t caused the vision problem with which I woke from surgery.  As an aside, she also didn’t think my blood pressure reaching 165/107 (stage two hypertension) was an issue and lectured me as to the un-likelihood of any problems resulting from it; that was until I reminded her that I had a stroke at 36 and all the doctors then had told me that wasn’t supposed to happen either. My blood pressure was spiking due to ineffectual pain management and amazingly it returned to normal once I had morphine on board!

Returning to this week’s consult and I decide to broach the topic myself asking if she received a letter from the Ophthalmologist I saw whilst in the rehab ward.  She had and the look on her face told me she wasn’t convinced. I then explained I had seen the eye doc a second time and she felt it was likely the swelling around my eye and surgical site causing the problem as it was unlikely my surgeon had damaged all the nerves of my eye – which were all testing poorly.

Dr. Harding was very certain as she told me she didn’t go anywhere near the cranial nerve during surgery, so surgery had not directly caused any visual issues.  I told her that was good to hear because it confirmed the likely cause as postoperative swelling, that would eventually, slowly resolve and with it, my vision.  I reassured her that I had no desire to wear an eye patch any longer than necessary and we both left it at that.

I asked about the Cerebral Angiogram she had said I would need within a few months of surgery and here I received another piece of good news. As my in-surgery angiogram showed everything was exactly as it should be post-clipping with no bleeds whatsoever, I won’t need to have another done until the end of the year.  It is her preference that I fully recover from the craniotomy before she subjects me (and my brain) to anymore intrusive tests.  That is fine with me!

Dr. Harding then scribbled a quick note for the administration staff, to have me scheduled to see her on her next visit to Alice, near the end of the year, smiled, wished me well for my recovery and showed me out the door.  I think I was with her for all of five minutes but that’s probably good, demonstrating that I am doing well in my recovery.

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.

Escape

It’s three weeks since my craniotomy and I escaped…um sorry…was discharged from hospital yesterday and finally joined Jason in his temporary home at the hotel.  It was a big day starting with a final assessment with the physio at 7.30am, which I did well enough at for them to let me go.  Getting out of hospital is a big milestone and signals the beginning of the next phase of my recovery.  Today hasn’t been the best day I have been incredibly tired and spent the bulk of the day on the couch snuggled under my dressing gown, only peeking out from this cocoon for pain meds and food.   Luckily, a dear friend has flown in from Melbourne and is staying at the same hotel for the weekend to help out or as I describe it to provide a boost of morale for Camp Skylight.  Having someone else here gives Jason some respite from having to do most thing for me.

I was a little ‘stoned’ this afternoon due to the morphine tablets kicking in with force (perhaps because I was already so very tired) and apparently was somewhat amusing when 4 fire trucks turned up in response to a building alarm, which turned out to be the hotel we are in.  I was quite excited to see so many fire men and crawled onto the window sill (it’s quite wide and not high for anyone who rolled their eyes while reading that) for a better view.    My friend dashed outside so we could snap a pic of her with the fire trucks in the background and as she playfully gripped the bars outside one of our windows, a fireman called out “Don’t let her in” much to our collective amusement. We found out later the alarm had been triggered by someone whom after cooking bacon and filling their room with smoke, opened their door,  introducing the smoke to the hall smoke detectors, thus triggering the alarm.  This is a heritage building hence the swift response of so many fire trucks.  After all this excitement however, I was quickly asleep on the couch again.

After enough rest, I managed a walk around the hotel and a drink at a quiet table at the hotel bar ( non-alcoholic for me) and it was lovely to do something so ‘normal’.

Hopefully tomorrow I will be a little stronger.