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.

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.

Contentment

Sitting reading, my attention is drawn away by the distinctive cry of a warbler bird, nested in the trees at the base of the MacDonnell ranges, I am aware of a great sense of contentment.  I awoke without the blare of an alarm and could make a pot of coffee and breakfast at leisure.  I have had time and opportunity to meditate, reflect and do some gently stretching exercise.  My time is my own and as long as I heed the signals of my head and body, taking the right pill at the right time, resting and applying ice as necessary, I have begun to have days of little debilitating pain.  Delightful days where my thoughts are clearer, my ability to cook and more importantly to bake is restored and I can see clearly the progress I have made on my pathway to recovery.

I no longer count the weeks since my surgery, always a sign that the emotional trauma is being released and healed.  I still have many limitations but sitting at my kitchen counter near the open back door, feeling the cool morning breeze dance around me, I am happy and am feeling, not lucky but perhaps, fortunate.  I have survived the worst of this experience and will continue to heal, become pain-free and have my function restored in those parts where it is missing.  I know this because I have done most of it before and because I have people who love me and continue to hold me up as I put myself back tougher again.  My contentment this day comes in part from the knowledge of that love and support.  My husband is a marvel and I truly do not know how I would weather the storms of life without him.  He understands me even when I do not, he holds my hand and passes tissues at those moments where tears are the only way left for me to express how I feel and he gets up early to the blaring of an alarm and despite his own tiredness and concerns, goes to work every day to earn the money that pays for me to be able to sleep, meditate, exercise and take the time I need to recover.

Love Quote

And The Eyes Have It

In all my healing and muddling through I have neglected to provide an update on my vision and associated things. A little while back I had a review with the Ophthalmologist at the Alice Springs Hospital eye clinic, to follow up on my nerve palsy, caused by post-operative swelling compressing the nerves of my eye, causing severe double vision. My friend E an Optometrist, offered to come along for morale support. Thinking it would be wonderful to have someone I could pepper with questions, should I be left with any, I welcomed E’s company. On the day, I was pleased to see my friend was there ahead of me, chatting amicably with the staff. In a place remote as Alice, my friend not only works for a private business but also with the hospital staff undertaking very remote travel to provide eye care in Aboriginal communities and also spends time working at the in-town Aboriginal health service. She is extremely busy and dedicated and it is this that makes me truly appreciative of her taking time out to accompany me with my relatively straightforward eye condition.

For more on eye health in Central Australian Aboriginal communities, these links may be of interest. http://www.hollows.org.au/our-work/what-we-do/improving-indigenous-health & http://www.hollows.org.au/news-media/town-alice

E introduced me to a colleague, Ms. M, who was visiting from Tennant Creek, the next largest town, 500 kilometers heading north, with a population of around 3,000 people. She was down to observe the Alice team at work for the day. I am not sure who would be seeing me but I have heard a great deal about Dr. Tim Henderson and the great work he does and doubted my condition would warrant his attention. After a short wait a dark haired young man walked into the waiting area, looked at the file in his hand, “Ahh, um, Ver-riana.” “Veraina,” I corrected gently as I stood.

I followed as he led us to a consulting room, with a couple of old chairs, a small desk and piles of boxes and equipment. I made my way to the seat next to the desk as E slipped in behind me, taking the chair by the door.   I told the doctor she was there for morale support (not realising he was a visiting student doctor and had no idea who she was).

He introduced himself and explained he would be examining me and doing all the tests before the Ophthalmologist would see me and asked me to please tell him the circumstances leading to my visit. As I began, I recalled a conversation E and I had a couple of weeks before my operation about patients wasting valuable time with trivialities. We were cooking breakfast whilst camping at Boggy Hole and somehow we got talking about what information is important to provide and her frustration with clients whom when asked the polite question, “how are you today?” go on to spend most of their appointment time actually answering the question, usually talking about anything other than the reason they are at the Optometrist. I recall telling her that after all my practice attending medical appointments, I thought I had become quite good at answering questions appropriately and providing relevant information.

I recounted the pertinent events to the student doctor relating to my eye issue, as concisely as possible. When I finished, I glanced nervously at E. She nods her head encouragingly and says, “You did good.” Thank goodness, I think and relax a little, as we shared a quiet chuckle.

The doctor proceeded to write notes and begin what became two hours worth of tests. After the first 45 minutes, E had to return to work.  Prior to leaving however, looking ever so casual, E asked the doctor his opinion of which nerves were involved in my case.  The young doctor pushed his chair away from the desk and faced her as he “ummed” and “ahhed”.  He eventually began a halting recital of his text books and whilst being put completely on the spot managed to provide an answer that E accepted as reasonable.  “Do you have an interest in eye health?”, her victim asked. “You could say that,” says my friend in an manner one might expect from the cat in and cat and mouse scenario.

Ms. M from Tennant seemed to adopt me after E left and asked if she could follow me through the testing as I was undergoing a rigorous process that enabled her to see a lot of what the team do. At one stage I had to have drops put in my eyes and wait as they did their thing, so we both took a seat in the waiting room and passed the time with talk of the woes of the health sector in Tennant and Alice, the decline of funding and then the joys of hospital stays. It was actually a really pleasant way to spend the time. When the nurse came out to give me the drops, she handed me a tissue and tilted my head back, “Now there are two different sets of drops so just stay like this while I do them.” I complied but when the second lot of drops hit my eyeball, they set off a searing pain. I bucked against the pressure of her hand on my head and stamped my foot in an effort not to punch her. As both the pain and I settled, my new friend was heard to murmur, “That’ll be the nerve ones.” Gee, thanks mate. You could have warned me!

After several tests the student doctor spoke with the Ophthalmologist, who seemingly disbelieving of what he was told, came into the room and repeated a number of tests and measurements. When, after two hours of every eye test known to woman, he finally met with me for the verdict, he explained they wanted to have a solid benchmark for my vision in the event of me having any issues down the track (particularly as I have brain aneurysms). Further, he told me I had regained the peripheral vision lost after surgery and my vision in the right eye was excellent. The only remaining obvious sign of the nerve palsy was in my eyelid, which was still drooping. He believed this would also resolve with time as would the weakness of the eye and the double vision I have with distance vision and when tired. The pain I have upon tearing up is nerve pain and it will hopefully also go away. He then said, “It is the fastest ever recovery from nerve palsy I have ever seen.”

Fastest ever, oh yeah, that’s right. Fastest. Ever. Recovery.

So much for: “Leave the patch on for six months and we’ll see how it’s going”.

Recovery Reflection

“Both abundance and lack exist simultaneously in our lives, as parallel realities. It is always our choice which secret garden we shall tend. The invisible underbrush holding us back is our own thoughts.   When we choose not to focus on what is missing from our lives but on the abundance that’s present – love, health, family, friends, work, and personal pursuits that bring us pleasure—the wasteland falls away and we experience joy in the real lives we live each day.” Sarah B Breathnach (2005)

A little over a week ago I wrote a post, laden with self-pity. It wasn’t my finest work, filled with errors and morose content. After posting it, I was plagued by a constant worry at the back of my mind that eventually saw me pull it down a few hours later. Asking for help can be challenging enough but to do so publicly, left me feeling vulnerable. I forgot that my email subscribers receive every post in their inbox moments after I release a post, negating my attempt to hide it.

At the time, I put my morose mood down to having a difficult week being unwell with a persistent sinus infection, which added greatly to my head pains, which in turn fueled my sense of recovery paralysis. But an interesting thing happened. A number of people contacted me, each with their own thoughts of how we could help motivate one another. In each correspondence lay sign posts for me to the many tools I already have at my disposal but have been neglecting to use or apply, and to new sources of inspiration and assistance.

This past week has seen a friend in Brisbane and I become walking buddies in that we phone or text one another at an agreed time to prompt us to begin our scheduled walks. It has been easy to set up and wonderfully effective in getting us out the door as promised. Another friend identified a few things in her life she would like to dedicate more time to and has since made a change to her schedule, providing her with time for walking in the mornings. She has also spoken with her wife about some of the priorities she wishes to pursue and was met with nothing but support. Yesterday a friend in Melbourne agreed to be my meditation buddy, so we can encourage one another and have someone to speak with as to our experiences. And my marvelous mother committed to walking a bit more in support of my efforts and has already surprised herself with how far she can go. She recently told me she, “continues to stagger along and despite some sunny days, still gets a sweat up shivering.”

What a bounty of rich rewards from an ill-considered plea for help!  When each of these people wrote me they shared something personal and vulnerable, which has both moved and helped me.  I am enormously grateful.

In the past week I have recommitted myself to meditation and my studies in this area, ensuring that I spend some time each day connecting with this deeply soothing practice. I began a hydrotherapy program with a session in the pool with my physiotherapist. A strenuous but rewarding work-out that left me tired but not weak, reminding me of how good it can feel to exercise within my capabilities. Although, there was a somewhat embarrassing but funny-in-hindsight moment in the whirl pool, when after having me walk many laps going with the flow of the water, the physio had me stop and turn against the flow. My legs were instantly swept out from under me with the rest following post-haste, had he not caught me when he did, I would have been dumped most unceremoniously into the middle of the kiddies pool.

I am walking at least twice a week and encouraging Jason to join me when possible. Fridays are also now marked out in the diary for my Pilates gym rehab program and recovery time, as it is quite challenging for me just now.  As I have begun to accept that my recovery is going to go at a slower pace than I originally thought, my exercise routine has been developing right under my nose.

I now realise that I haven’t, as I feared, changed from being the hard driven ‘excel at rehab person’. It is those very traits that have been making me feel so bad, begging to be released to get to work with my body.  The pain medicines have been providing a buffer, slowing things down and giving me time to rest and recover.  I am so used to my own mental ‘whip-cracking’ to keep my life on track that its absence has terrified me, leaving me blowing in the wind so to speak.

This past week has seen a lot of thinking going on in this head of mine and I have realised that I have been making myself miserable.  The effects of the medications has certainly blunted my motivation and caused a great deal of lethargy but I have been looking at this recovery as an ‘all-or-nothing’ deal.  If I can’t exercise to the absolute limit of my capabilities, then clearly I am failing, right?  Wrong and I can see that now.

Brain surgery is a big deal and it turns out, I have needed (and still do) a great deal of rest to recovery from the operation, the general anesthetic, the hospital stay and all the other meds pumped into me.  I seem to be the only person not to know this going in to the op or coming out.   I do now however and I refuse to let myself judge my progress poorly any further.

Thank you for reading and supporting me throughout this major life event and your patience as I find my way back to full health.

Am I Prepared For Death?

I woke this morning with this question in my mind. Those of you whom read my ramblings in the lead up to surgery know that I was very much preparing for such an eventuality. Yes, my legal and financial affairs were documented, agreed to and witnessed by the appropriate people. My decisions regarding what use some of my body parts could be put to, was also decided and agreed to by the relevant family members, to whom I am eternally grateful. Consensus or at least respectful understanding in such matters makes the process all the easier.

But am I prepared for death? As I pondered this question in the morning’s chill air, I opened an affirmation app on my phone. Anyone who knows me knows I have used positive affirmations as part of my coping strategy throughout my life. Interestingly (to me anyway), today’s affirmation read, “I am thankful for all the days of my life that I have lived so far, and for all the days I have yet to live. Life is so good.” By Louise Hay.

As my surgery date bore closer and closer, I made a point of thanking those closest to me, for their friendship and all they have done for me. In these somewhat awkward conversations, and whilst believing I would have a good outcome from surgery, I still felt the need to say goodbye.   Some calls were exceptionally difficult to end, as they felt all too final. In my attempts to acknowledge the genuine seriousness of what I was about to undergo, I had to also embrace the prospect of my death.

During this time, Jason and I became kinder and gentler with each other, as though the possibility of death somehow brought life into sharp focus and we wanted to ensure we were fully present with one another. We were more loving and appreciative of the other and took time to rest quietly in each other’s company; many hours were spent cuddling on the couch, some times in silence, others discussing all those difficult details.

Now, many weeks later, after all going well and recovery progressing, I find myself noticing how life’s little annoyances and frustrations intrude in the bubble of gentleness the prospect of surgery created around us. The occasional snappy response, the grumbles, the inattentiveness that we all experience, no matter how much we love and care about those closest to us.

How can we live our ordinary lives and still hold onto and cherish those we love, in every encounter, every moment together?

Thankfully, I think we are doing pretty well, as the seriousness of what we have just gone through together has affected us deeply, made us face what we could lose. Occasionally one or the other forgets and gets cranky but we are quick to apologise and move forward together.

Jason and I have a rule that gets deployed at times of enormous stress and that is simply to be kind to ourselves and each other. At these times, we focus upon being gentle with our words and supporting one another usually by focussing on how events are impacting the other rather than ourselves. We also lift the takeaway and junk food embargo to enable us to eat our feelings but for a limited time only. We don’t need to add obesity to the list of things to worry about!

As I ponder my preparedness for death, it makes me reflect upon my life and allows me to see the good, the lovely, the necessary and the wonderful.  A moment spent watching a parrot feeding in the garden, of feeling the sunshine upon my face, of inhaling the heady aroma of good Australian tea, of watching my husband prepare a meal for me, of gathering wild flowers, of laughing with friends, of reading a good book, of waking in the warm cocoon of a doona, of holding hands with someone I love, of walking unaided, of biscuits baking, the list goes on and on.

It might be clichéd but it is genuine, thinking about one’s own death shifts you into a different headspace where gratitude lives large, fear is diminished, and life takes on a brighter hue.

“Death is a part of life, as natural as the sun rising and setting each day; as natural as a flower blooming one day, and then withering the next.  Life is a terminal disease; we are all dying. It is our non-acceptance of that reality that causes the fear and suffering; acceptance brings peace, calmness. It also brings awareness of the need to live our lives in preparation for death.  This type of thinking is not morbid and unhealthy – it’s positive and healthy because it means we’ll be ready for death when it happens. And it means we’ll be happier now, while we are alive, because we’ll be living a good life – living ethically, avoiding negative deeds, doing positive deeds as much as possible.”

Ven. Sangye Khadro.  ‘Taking the mystery out of death and the after’.