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.

Pre-Op Prep

After signing the surgery consent form and meeting briefly with the anaesthetist, I am wheeled in bed from my room to the surgical staging area where two theatre nurses are waiting.  The nurse whom accompanied me from the ward, hands me over to them, lays her hand on my arm, wishes me good luck and disappears back the way we came.

The theatre nurses introduce themselves, explaining they will now prepare me for surgery and will be looking after me throughout.  The two women have an easy rapport and routine born of a long time working together.   I observe them as they check their lists and my details.  Another person joins us – the anaesthetist nurse.  She will also be looking after me in theatre she tells me as she wraps my legs in mechanical compression devices for the prevention of clots.

I am now moments away from being wheeled into surgery.  Everything slows down for me and I take in the activity around me, keeping my breathing measured and calm.  I take a moment to look sympathetically at the man nearby, standing at the head of another bed, patting the hair of young man (his son I presume, he looks about 16 years old).  The young man is still and staring at the ceiling looking terrified.  I feel for them both.

The nurses finish the paperwork and getting me into another gown and tell me they are taking me to theatre.  I nod and begin the slow ride to my fate.  I look at these women, in their theatre scrubs and think how good it is they introduced themselves and let me know they are there should I need them.  Their hands and the anaesthetist’s will be the last I feel before I am rendered unconscious.  Unexpectedly, I find myself reflecting upon a dear friend, who used to be a theatre nurse, and I am filled with comfort at the thought of these nurses being like my friend, as I cannot imagine a kinder, more reassuring person to have in theatre.  Imagining my friend is with me as I take this step helps me to proceed with calm curiosity and confidence of a good outcome, as the wood and glass barn doors of theatre part to allow me entrance.

Thank you, Miss M.

My hospital Stay in 30 seconds

Aneurysm, Anzacs, Brain, Bruises, Craniotomy, Cards, Dizziness, Drugs, Enemas, Extra Blankets, Friends, Flowers, Gym, Gifts, Husband, Hudson’s, ID, Intravenous, Jason, Jelly, Kindness, Kids, Love, Laughter, Mum, Mother-In-Law, Neurosurgeon, Needles, Operation, Ouch, Pain, Pool, Queries, Quest, Rehab, Relief, Sleep, Specialists, Tears, Trapped, Underwear, Uncertainty, Visitors, Vomiting, Worrying, Writing, X-marks-the spot, X-ray, Yammering, Yearning, Zits, Zonk.

The Results Are In…Rehabilitation Assessments

I have been somewhat vague about the outcome of my assessment in the rehabilitation ward in hospital.  Now that we are home and I have a better idea of what I am dealing with, I feel able to write about it.

The surgery itself appears successful and was without incident, for which I am incredibly grateful.  I have dissolvable stitches rather than staples and Dr. Harding managed to save most of my fringe (which is great given I had no idea the incision would go all the way to my forehead!).

I have not suffered any injury related to a bleed or incident during surgery but the effect of having surgery on my brain has left me with a significant escalation of my prior stroke deficits.  These deficits can recur at times when I am unwell or have been overdoing things and it is easy to understand why they would reappear now.  Admittedly, going in, I wasn’t thinking of this as a potential consequence because there were so many other scarier ones to ponder.  I have however been disappointed to see just how poorly the left side of my body is working. Some of the tests for hand movement produced results similar to the function I had in the first year after the stroke.

It was due to this increase in deficits that I was transferred to the rehabilitation ward.

Once the physiotherapists started getting me up for walks and testing my balance, I quickly became aware that all was not quite as it had been prior to the operation.  After further assessment by the Speech Pathologists and Occupational Therapist, I knew what I was facing.

The entire left side is affected including my face and mouth, affecting speech, chewing and swallowing food. My hand is weaker and the fingers are curling and over-gripping items and when used for a continuous period, they curl up and become useless. My arm needs to be consciously moved first thing in the morning or it just hangs there doing nothing. My leg fatigues easily and I need to concentrate to stop my knee from snapping back in an uncontrolled manner with each step, while the foot turns inward and the toes curl up whenever I attempt something ‘strenuous’.  I am also very sensitive to noise and simply cannot concentrate if a TV is on or there is some other persistent noise.

One deciding factor for Dr. Harding as to which side to approach the aneurysm, was that I already had a stroke affected side thus if any brain damage were to occurred during the op, it would be preferable for it to affect my already affected side; thus the right-sided approach.  This was a sound decision to my mind prior and remains so now.   No damage occurred during surgery but my brain has experienced a trauma and as a result, I have an escalation in the severity of the previous stroke related problems.

Once the physios begin working with me, they also identify a significant issue with balance (umm, actually, I probably did that myself when I realised I couldn’t stand up without nearly falling over!). My brain’s vestibular* system is not working properly (another stroke legacy, as are my proprioception deficits.  I had a brainstem stroke which causes more ‘global’ impacts upon the brain.).  This makes me unsteady on my feet, incredibly dizzy and frequently nauseous. The physios soon work out that they need to be holding a spew bag whenever they have me doing head moving exercises. I will concede it has been amusing to see how fast they can move once I start retching! I tease them thusly, “Ah, Physios, they talk big and like to push people’s limits but hate being vomited on.”

Lastly, I am sent to the Ophthalmologist (eye doctor) to check my vision, as it hasn’t improved as everyone said it would.  Initially my surgeon said the double vision I am experiencing was likely due to bruising to the eye muscles from when they drilled through the skull close by.  At the two-week mark there has been no improvement and I still have to wear a patch over my eye to enable me to see normally. Without the patch, I quickly become disoriented and dizzy whenever I move or look around too much.

The Rehabilitation Physician decides as a precaution to have my eyes looked at because my limited vision is impacting my ability to walk and exercise freely.  One lunch time I am escorted out of the hospital and walk over to the Specialists Centre next door. I sit in the waiting room in a posh building, feeling somewhat self-conscious about the bright pink slippers adorning my feet, but soon forget the slippers as a man near me attempts to whisper to his female companion, “Look, she’s got a big scar on her head.”  Awesome.  I silently urge the eye doc to call me in.

Soon enough I am in the doctor’s office having been taken through some preliminary vision checks and she is now covering and uncovering one eye and studying the movements of my eyes. Without pretense, she tells me I have “What we call, fourth nerve palsy.” She then proceeds to explain in detail what she suspects may have happened and the recovery process.

The fourth nerve is a very thin cranial nerve and it could have been stretched or affected in some way inadvertently during surgery. If this is the case, it could take 4 to 6 month to recover. If it doesn’t recover in that time, they can give me special ‘prism’ glasses to help with the double vision and if at the 12 month mark it is still a problem, they will recommend surgery to fix it.  A bit stunned, I ask her to please write the name of it down for me.

The doctor then schedules a follow-up appointment in 2 days time to fully assess my visual field. These tests show I have lost some of the peripheral vision in the right eye. I will not be allowed to drive until all symptoms have resolved. The Ophthalmologist also now thinks the third and sixth nerves are somewhat compromised and she hopes it is from swelling post-op and that my vision will improve as the swelling resolves.

In the meantime, I have to wear the patch and I can leave it on the right eye as this is the weak eye and trying to force it work too much is counterproductive. She also tells me that it won’t weaken the eye.  Lastly, she tells me I probably will not be able to read for longer than 10 minutes at a time and may want to give it up for a little while, as it may become a source of frustration.  She’s right!

I also then have an assessment with people from the Guide Dog Association arranged by the OT at rehab. They go through elaborate testing that mostly replicates the results of the Ophthalmologist but with less skill and accuracy.  I found the entire thing to be mostly a waste of time. I had been expecting some assistance in mobility and how to navigate the world with half my usual vision but did not receive anything other than, “Have someone with you when you go walking.”  Only later do I learn that the second person present during the assessment was a mobility officer. This person said nothing the entire time they were with me. I’m still a bit cranky about it!  They did however give me exercises to strengthen the eye with the warning they would be challenging and are likely to bring on migraines.

So I came away from all the testing and assessment feeling somewhat deflated. The eye thing took me completely by surprise and when I finally told Jase about it, I burst into tears. I felt overwhelmed again as the list of deficits kept growing but the loss (even temporarily) of my vision was hugely distressing. Jason for his part was rock solid and told me without hesitation that it would be the swelling and once that went away my eye would be back to normal. I clung to his words as though they were a life raft in the sea of my fears. I have since come to believe this for myself as my vision has begun incremental improvements.

I eventually decide whilst still in hospital that I’m not going to worry too much about it all because:  a) I am recovering from brain surgery and have been really unwell; b) I need to put my energy into recovery;  c) I have the opportunity for rehab support; and lastly, d) I have recovered from most of these things before and if I have to, will again.

The extent of my ‘deficits’ may surprise anyone who has seen me in the last few weeks and it reminds me that when I had the stroke, I worked hard to remedy those aspects that were most noticeable and developed the habit of ‘hiding’ my deficits. I became experienced at adapting around them to the point that even health professionals couldn’t tell how greatly impacted I was without undertaking an assessment. This helped me in my recovery to a point and has apparently become an ingrained habit.  Hiding however, hasn’t helped me get the support I need and I have been overlooked in the past for rehab because I appeared to be managing so well. I know I am a perfectionist and an A-type personality and those things give me the drive and determination to succeed but they sometimes also prevent me from acknowledging how much of a load I am carrying. Thus I share this with you now. The surgery went fine but it has left me with some work to do.

 

*The body maintains balance with sensory information from three systems: vision, proprioception (touch sensors in the feet, trunk, and spine) and vestibular system (inner ear). Sensory input from these three systems is integrated and processed by the brainstem. In response, feedback messages are sent to the eyes to help maintain steady vision and to the muscles to help maintain posture and balance.

See more at: http://vestibular.org/node/2#sthash.Swf7v1lF.dpuf

 

 

 

 

Nine Weeks

Today is nine weeks since I found out my brain aneurysm had grown and started my trip down this rabbit hole.  So much has happened in that time and I feel as though I have travelled far.  In an attempt to help me remember where I have been I began jotting a quick daily summary because though I am in hospital my days are deceptively busy, at least it feels like it to my poor ole brain!

Some of today’s highlights include: accidentally pulling out a wound stitch with my comb; enjoying a free hand massage; increasing the intensity of my rehab exercises (by the physio not me!); watching a group of brightly coloured parrots hang out on the balcony on the building next-door; revelling in a visit from a dear friend from Melbourne; assessment by an OT; starting yet another pain management drug; and taking my first unescorted walk from the gym to my room (all of 15 steps but woo-hoo all the same).  All in all a good day.

My world is quite small at the moment but with each day and some effort, it increases a little.  In the meantime, I will continue to try to find those moments that remind me of what it is I am working towards – freedom, independence, home and health.

 

 

Laughter In The Face of Practicality

Warning – Organ Donation topic. May upset some readers – did you read that mother??

Was talking with a friend yesterday and I mentioned I was finalising the paper work to donate my brain to research in the event of my death – you know, when I’m 100.  I explained that due to having had a stoke and two brain aneurysms, the Brain Bank (seriously, that’s what it’s called) have said they are likely to keep my brain in tact, should they get it.  Apparently, most brains are sliced up and distributed to a number of researchers.  I commented that they probably would be interested to see the well worn pathways of my habitual errors.  My friend said they’d probably be interested to see the size of the area responsible for resilience.  We joked then, that part would probably still be pulsing even in its storage tank.  We thought this was very amusing.

 

Weird Day

I was rushing around getting some last minute errands done this morning when I took a call on my mobile.  I am answering every time it rings at the moment because I have the hospital calling for this or a tradesperson for that and I prefer to keep things moving along as much as I can before I hand all that over to Jason to handle.

I was rushing to the chemist to drop in my prescriptions, an annoyance in itself.  I manage my own medications (there are a few of them) and I do this in part by making up a dosset pack each month.  Unfortunately though when you are a patient in hospital, you are not allowed to ‘self-medicate’ and I understand all the reasons why.   When I am admitted, I will hand over all my meds and they must be in their original packaging.  What generally happens is (and this is from first hand experience), I hand over my meds and they are put in a locked draw in the bedside table and each morning and night, the rostered nurse comes in, checks my chart, unlocks the drug drawer and then rummages through the dozen boxes asking which ones are which.  The beauty of having a dosset made up is that I don’t have to think about it.  I can with complete confidence tip the pills into my hand and know that they are what I need to take.   Expecting a patient who is drugged, unwell, etc. to be able to communicate sufficiently as to which box they should be selecting, is, frankly flawed!

Forgive me.  I digress.

I was going to the chemist and my phone rang.  It was a ‘cold-call’ asking if I wanted to take out funeral insurance!  He had my complete attention at that point.  My mind then raced as I thought of and discarded possible responses when I settled on polite, dang it!  I told him I had all the insurance I needed.  He tells me how much he was hoping to hear someone say that today and my patience begins to slide.   He proceeds with his sales pitch, asking me how much I pay a fortnight for my insurance and I tell him it’s none of his business, thank him for intruding on my day and hang up.

If ever I doubted the extent of the computerised Big Brother, I doubt no longer.

I proceed with my errands, enjoy a spa visit to rid my body of hair in several places and enjoy being somewhere where there is nothing for me to do and no one here knows what is approaching for me at week’s end.  I can pretend for a short while that life is completely normal.  Then it’s on to meet Jason and head to the Alice Springs Court House to have my Power of Attorney documents witnessed and certified.  From sanctuary to harsh reality in 10 minutes.

 

 

 

Love in the Midst of Calamity

When I suffered a disk rupture in my spine (L4/5) in 1998, I was admitted to hospital in excruciating pain, unable to walk or pee for that matter.  I had to wait several days before having emergency surgery to relieve the pressure on my spinal cord.  The delay was due to me refusing to let the foot orthopaedic surgeon who did the ‘occasional’ spinal work operate on me.  While I waited for the senior spinal orthopod to assess me I had time to ponder my circumstances.

Jason and I were living together and had recently become engaged.  We had been together for three years.

As the time of my surgery approached, lying flat on my back, unable to do the most basic things for myself, my thoughts were dark.  Fears of being permanently paralysed consumed me.  On surgery day, when the orderlies came to wheel me to theatre, I felt nauseated.  Jason who had hardly left my bedside stood up, kissed me and told me it would be ok.  He let go of my hand and my bed began to be manoeuvred out of the ward.  In desperation I flung my left arm out, back towards him in a last ditch effort to quell my fear.  He took my hand and the bed slowed.  I blurt out a question, “What if I end up in a wheelchair?”  The question was loaded with every fear I had.  Jason, moved closer, looked me in the eye and with unflinching bravery said, “We will move somewhere without stairs.”  In that moment he told me everything I needed to know – whatever the outcome, he would be with me and with his love and support everything else would be ok.

I knew I loved this man but I never loved him more than in that moment.

The Straight Man

Three different health professionals in town have now told me that my Neurosurgeon is “brilliant”, their words. My GP went one better adding that she is meticulous. He then somewhat soured the mood by telling me that Neurosurgeon’s don’t go into the brain anymore unless they absolutely have to.

When I saw him yesterday to confirm the surgery date and get him to prepare my travel assistance request for the NT Government, we had gotten through everything and as he turned to hand me the papers, concluded by saying, “Well that’s everything.” To which I replied (rather dryly I might add), “Yes, the only thing left to do now is have brain surgery.”

My new GP  has a reputation for being ‘medically’ excellent but rather gruff in nature. He strikes me as very ‘let’s get down to business’ like and I don’t mind that. I need a GP who can help me manage all the complexities of my care and he has been very proactive and helpful – when I told him I needed surgery, he momentarily looked stunned but then proceeded to go through three text books until he found a good picture of the part of the brain in which my aneurysm lurks, so he could show me and make sure I knew what was going to be done.

Yesterday, after my surgery quip, he actually sort of grinned and then as he walked me to the door, wished me well, said he’d see me when I returned to town and told me I’d be fine and actually cracked a full smile.

I think he’ll do fine as my doctor – I just had to break him in.

Living within the Storm

As I attempt to write up my Advance Personal Plan (Power of Attorney & Living Will) in between loads of washing, I feel as though I am living a double life – the first is ordinary, filled with mundane chores like cooking, washing, groceries and appointments; in the other I am pondering life, death and disability, worrying about how much pain I am going to go through, talking with family about my preferences should I be incapacitated, preparing documents to ensure my wishes are known if the worst were to happen.

As I hang the washing on the line, I try to do so with all my attention but am aware that in the background, my mind is churning.  As I plod  through these mundane but necessary jobs, I feel at times, detached from reality, living in duality; one life completely normal, the other a nightmare.   I need to embrace them both as to live in only one, will leave me unprepared for the other.