The Quiet

It has been very quiet around here. I apologise for that. It reminds me of Bjork:

It’s oh so quiet;

it’s oh so still.

You’re all alone and peaceful until ….”.

Luckily it is not followed by the loud “zing boom” associated with bad news. Nope none of that dark skies and gloomy headlines and deadlines. No tumour or brain cancer update or that being the underlying reason for the “stilte” (stillness). All is well in the house of orange.

It has just been incredible busy. And I am thankful for that. The ability to work hard, moving house earlier this year, getting hands dirty with loads of DIY and seeing the vineyards being harvested around us are all reasons to celebrate life. On the downside, time for writing (apart from work related stuff) and running has been preciously limited. I need to get back to those.

I am aware that I can also grumble at times about work. Or being tired due to work. But it is a privilege to be able to work, to provide a service to people I meet and to love what I do. Can it get any better than that? There will always be some budget shortfalls, last minute emergencies and at times long hours. But in a country where there are so many who do not have work or where illness have robbed some desperate longing to work from that opportunity, I can only embrace an attitude of gratitude. To be able to enjoy and love what I do, calls for festivities!

I am well. Even when I am off-line and off the grid. Even when I drop in for a quick read of other’s blogs, I do not forget the others I’ve met in blog-land who has battled with brain tumours or life’s other curveballs. Thanks for anyone who gave me a thought since I last put my thoughts in words.

“the sky caves in
the devil cuts loose
you blow blow blow blow blow your fuse
when you’ve fallen in love
ssshhhhhh…”

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MRI Brain Scan: a crash-bang-bang course

It’s the 23rd. It is a positive start”, I think when the receptionist said the date. 23 is my lucky number. I completed most of the paperwork the previous week when I dropped off my oncologist’s referral letter. A few more dotted lines call for my signature. I don’t know how many MRI scans I have had; today’s might be 6th. However, the last one in March was the most important. The one labelled, “all clear”.

How do I approach a brain scan? Like everyone, I suppose I my own ways. Each person will bring specific fears, unique routine and mental preparation before facing the tunnel. Earlier today my rituals consisted of the things under my control. Having a shave, dressing in my favourite light orange and white shirt, wearing comfortable jeans, putting on my trial running shoes that make me feel grounded, a call to confirm the appointment time and leaving enough time to arrive early. Nothing out of the ordinary, but it is the ordinary and familiarity that bring comfort.

I arrive at the hospital 15 minutes early. I don’t carry anxious thoughts with me, never been a great advocate of worry. But I sense the tension in my back and shoulders. It’s not possible to ditch all the anxiety. It tends to sneak in when you are not looking. Anneén arrives before I reach the main entrance. I told her she did not have to come, but it is a great comfort to have her with me. Knowing she will wait in the reception area when it’s all done. It is oddly quiet when we slowly criss-cross through the hospital passages. Most of it was renovated recently and signs warning of wet paint still serve as decorations. “They could have done with a bit of colour” we agree. No one else waits in the reception area. The school and university holidays provide a nice change from the usual hustle and bustle.

When called, I know the drill. I leave my outer layers of safety behind and emerge from the change locker in a faded peach colour garment. A further breakdown of any aesthetic possibility comes in the form of my long black running socks sticking out from underneath. Comfort? Yes. Sexy? Definitely not! I wait for a few minutes underneath signs and arrows that directs towards different scan options. A cleaner slowly sweeps the floor area surrounding me. I feel a need to focus on something. Unfortunately the small Beavers and Butthead cartoon on the notice board is too small to make out the writing.

Luckily the bad joke requires little time as it is 8:45 and the MRI scanner waits. Lying down on the flat surface is the easy part and fairly comfortable. The radiographer knows about my previous scan experiences, so she shiftily hands me the earplugs (to reduce the noise) and place two sheets of white foamy stuff both sides of my face. She moves my head slightly to the left and gently pressed down on my chin to position my head correctly. The small rubber bubble is placed into my hand, in case I need to call for help. It provides some security, as I used it on a previous occasion when the claustrophobia got to me. Finally she covers me with a blanket for both physical and emotional warmth. All I need is music to relax, but it is not available as I am not allowed any metal (not the musical type) or earphones in the tunnel due to the strong magnetic fields.

You can open your eyes if you want to”, she says as I slide into the tunnel. “There is no way”, I replied louder in my head than in words. I made that mistake once before. I don’t like narrow spaces. I admit that I don’t like being out of control either – especially about my physical space. I can feel my elbows being slightly pushed inwards by the sides of the MRI’s tunnel. For a moment I am aware that the blanket is slightly pulled back on the sides due to inwards movement. “I am covered like corpse”. I don’t know where the thought came from, but I was ready for it. “I am here because I am alive”, I counter-argue. “I am here being I want to remain healthy and value life”. And so my process in my head starts to manage the crowded space and mechanical noise.

  • I start with thoughts. Focussing on being alive. The people who matters for me. I am doing this for them and me. What I know. For example, I had no symptoms or strange behaviour (as far as I know at least!). What is important (staying healthy)
  • Visualise memories and beautiful images. Seeing my daughters jump on the “bungee trampolines” the previous day. Looking out over the sun covered vineyards with snow covered mountain peaks behind.
  • Letting go of these images and thoughts and let them flow away like thick honey.
  • Slowing down my breathing. Being aware of my breath, rather than the lack of space around me.
  • Comparing the mechanical noises with sounds I know. I hear a large mechanical bee, a dentist drill, an electrical mosquito, a loud air-pressured drill. A hammer against a water pipe.
  • Physical sensation (such as an itch that I can scratch) indicates to me that I am alive.

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It does not feel like “about 25 minutes”, but after a short silence the radiographer returns and injects my arm with contrast dye. This makes certain tissues and blood vessels show up with greater detail on the scan. I move back inside with less tension for the last 15 minutes. I allow my senses more freedom to explore the experience. Mumford and Sons are still playing “After the Storm” in my mind when I exit the scanner’s tunnel. I am set free.

2013-09-23 12.11.21_resizedIt is 3 hours later and we are sitting at the neurosurgeon’s office. I am aware of the results CD in my hand. The CD is light, but the engraved information carries a different weight. Martin greets us as he walked passed. He needs to quickly go to the ward, but will be with us on time. On his return, Martin opens the scan result on his computer. There two brains, both mine, on display. One from the March scan. The other from this morning. They look similar. Martin shows the left frontal area where the operation took place. I dark area indicates where the tumour and some brain tissue were removed. Nothing else shows up. The scan is almost identical to that done in March. I am clean. No cancer growth or tumour cells are visible.

Once more I am set free.

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The Tough Going

I love those moments when creative thoughts awake in the cortex and streams like golden liquid down neuro-pathways onto the white screen. Words that splatter out ideas, experiences and events into a synchronised line of meaningful thought. Or when the artist’s imagination draws a vision that flows in charcoal and paint onto a canvass to bring beauty into life.

But occasionally dark skies cloud the psyche and dwarf the imagination into submission. Troubled times arrive in the form of external events and dries the magic and steals the funny bones. And no, not all of these shadow times relate to brain tumours or cancer treatment. At times it is just life. Waves of “it happens” that saps the juice and suck the marrow from my fruit. Not so much Carpé Diem, more crap and damn.

It has been a rough 4 weeks. In between my car breaking down (twice), a broken tooth and attempts to replace it with a temporary implant (3 times and still not right), a drawn out winter the soaks Spring into a foggy memory and aiming to take that big grown-up jump again into the dark (called house hunting), the good times have been sidelined. Over the same period work slowed downed, adding pressure on responsibilities such as paying the tax master. It felt like sinking, drowning in the smoky skies.

Wet Winter

While holding up this grim picture, I am not bursting into sing and dance. I am actually not a great believer in positive thinking, or when the dark cloud comes rolling over the hills that you should start searching for the silver lining. When the dark clouds appear, find shelter. The storm while pass, but while it sweeping down and pouring gallons of water on the earth, curl up under a warm blanket. Stay dry, stay warm. It’s OK to cuddle up.

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Brain Surgery – 1 year on

6 August 2013

Special occasions don’t start with fireworks or with an extraordinary sunrise and awakening. Today was a grey, rainy day in the Western Cape and Boland’s wine region. Anneén left yesterday for Namibia for work, so I had to get the girls ready for school, sort the dogs out and tick-off my mental checklist of lunchboxes, reading-bags, vitamins (for them), Epilim (for me), dog food (for the 4 legged ones), umbrellas and signing the form for the nurses’ visit to school. Quite ordinary for an anniversary.

The trip to school was filled with playing “I spy” and “asking daddy hard questions”. Today’s clincher: “Why can only mommies have babies in their tummies?” (Do boys ask similar questions?), while filling the traffic cues to the local primary and secondary schools. Several cars with University students shot past, making the most of the current free parking situation in Stellenbosch. Dropping the girls off as the school bell announces the start of another day of learning. Close, but in time. All quite rushed, but precious moments as they turn around to throw themselves into a goodbye hug and run into the crowd of blue uniforms and playfulness. Ordinary does not rule our being touched by these moments.

Driving 45 minutes to work is more or less the norm. As is the case on my Monday and Tuesday journeys, my iPod playing the latest Kermode and Mayo’s film review podcast from BBC Radio 5 live (something I can recommend to any lovers of movies or talk about movies if, as with us, it is difficult to actually get to the cinema!). Nothing out of the norm, but the routine providing a sense of familiarity and security. Stopping at the first clinic to complete a memory assessment. Then to the hospital for a psychotherapy session at the heart unit, before arriving at our practice for two more consultations. Awareness of my anniversary is left in the car, while my focus shifts to the clinical and therapeutic tasks at hand. I am appreciating the privilege to be able to work and to be productive.

Lunch time I am rushing back home to look after our girls given that mum is doing a bit of jet-setting. My iPod’s shuffle kick-start Alanis Morrison’s “Thank You”. I am thankful that it is a year on. Should I say thank you for the brain tumour that dropped into my life in 2012? Alanis’ words resonate with me:

Alanisthank you terror
thank you disillusionment
thank you frailty
thank you consequence
thank you thank you silence

 

But no, I am not thankful that I had a brain tumour. But I know that I don’t have to fight against it (for now anyway there is nothing to fight against). Anneén and I had all of the above and I can find ways to be thankful for having these daunting experiences and what it taught us. But I am not trapped by them. I don’t have to fight. I can just take responsibility. I can look after my immune system, I can stay healthy (without overdoing it), I can run and can live life. I can love my family and friends and look after my emotional well-being. I can set challenges and we can have celebrations. Bob Dylan steps on stage after Alanis – my iPod is the coolest DJ!

In between doing the dad’s taxi service I stop off at Martin’s office. I feel a bit embarrassed about the “Thank you” – card. The options at the SPAR were limited to “field of flowers” or “laughing baby”. Flowers it was to accompany the bottle of red Tamboerskloof Syrah (no embarrassment about that choice though!). I am pretty sure he won’t allow the enjoyment to interfere with his next craniotomy, but hope he will raise a glass of the peppery and berry crimson nectar to celebrate my extraordinary-ordinary anniversary of life a year post-operation.

the moment I let go of it was the moment
I got more than I could handle
the moment I jumped off of it
was the moment I touched down

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Wishes For My Daughter

This so stunning and words I can identify with, that I need to share:

Wishes For My Daughter.

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The craziness of June

It is always an odd month. Littered with birthdays and a few public holidays prior to the winter holidays, there always seem to be something to be done, something to remember. But this is balanced by the fatigue of working hard over the past few months and feeling in desperate need of a holiday.

The ideal is the transition from hard work to holiday would be smooth and without stutters. Always the ideal. Reality tends to float in a different direction. For example, I’ve had a few mental lines and ideas I wanted to write about it over the past few weeks, but an unforeseen pitfall (aren’t they always?) sabotaged them. Nothing less surprising that our new puppy’s sharp teeth cut through my laptop’s power cable. The result was no laptop, work in the form of reports that needed to be written heaping up and my frustration levels hovering just beneath the ceiling. Probably proof that I am addicted to my laptop and lost without it…

But hope prevailed and after my new ambilical powercord arrived, I could start catching up on work, but not on more creative writting. All systems go and got 95% done before we would leave on holiday. Just one more innocent run to the post office to pick up my new Nicky French novel and we would be ready for our week away. Ideal. Fantasy.

Unfortunately I dropped my car key. Key as in plastic card to start my Renault. Reality: key not working, loving message from car reading, “Key not detected”. There I was with my book, but stranded in front of the post office. From past experience I knew there was no way I would get some TLC from Renault in my hour of need. Luckily through the help of a colleague and going through a few contacts from a master mechanic, we left the road less travelled (in colleague’s car) and wound our way into some dodgy areas to find a “key specialist”. Lets not give away to many details, but to say money exchanged hands and somehow I got a working key. For better or worse, I became part of a different food chain.

So, holiday started and so far so good. The girls dropped off at Oupa and Ouma (Afrikaans for grandfather and grannie) and drove through to Grahamstown for the National Arts Festival. Something Anneen and I have not done for 11 years. Also our first holiday on our own for 8 years. Reality does always suck. A great week of theatre, dance, comedy and music to dive into. And most of all, just to relax and to enjoy every moment. Watch us go!!

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A year on

Certain anniversaries are hollow. One year after your girlfriend dumped you. A year after your dog died. 12 months following your diagnosis of something that caused an epileptic seizure. There is a knowing that it is a significant date, but a need to avoid it. As with all significant dates, there is no escaping it. The calendar does not lie.

I decided well in advance of the 17th of May 2013 that I am taking the day off and will limit my driving. Just to be safe! On the day, a year before, leaving work on Thursday evening at about 6 pm was not out of the ordinary. Feeling tired was also expected as I was working hard and my working hours was often stretched to after 17:00. Waking up under bright lights on a hospital trolley was however unusual in the extreme. A first I can say in all confidence. A first since birth to be precise.

But there I was, dressed up in an angel white hospital gown. There was Anneén, in tears, describing an accident I was involved in on my way back from work. I was? I was. A tow-truck driver found me in my car next to the national highway after he spotted my car under a bridge against a guardrail. My car was not seriously damaged, but I don’t want to think that I might have ended up in the ongoing traffic if the barrier did not bring me to a slow stop. But thinking about all the scenarios remains vague and hazy as I have no memory of these events. Anneén could have told me that I was hit by a meteorite and I would be without any evidence to disprove it. Apparently I had two further seizures before the ambulance arrived. Apparently I was aggressive when they tried to rouse. Apparently so. All the things I just don’t know. It left me puzzled. And so were the doctors initially. Brain Scans done. Bloods taken. The initial diagnosis was Neurocysticercosis. This is described as, “Patients from an endemic areas presenting with seizures, a normal neurological examination and spontaneous resolution after therapy with albendazole”.

But no, this was not accurate. Follow-up MRI Scans showed that rather than going away, the “part” in my left frontal lobe was gaining in size. “It’s a brain tumour” the kind neurosurgeon informed. And so the journey of uncertainty, fear, anxiety and worry started. I was operated on. Twice. A craniotomy was performed to remove the brain tumour on the 6th of August. Two weeks later I had a bit of leakage upstairs and another operation was performed to close the leak in the meninges. So, twice my skull was flapped open and twice the repairs were done. Treatment followed in the form of radiotherapy, chemotherapy and more chemotherapy. Not the journey I was expecting for 2012 and the start of 2013. But so I was.

Long Table RestaurantOne year on. It was not a bad day, it was just day. Anneén and I took the girls in the late afternoon for drinks at the Long Table restaurant that overlooks several wineries and scenic views towards Stellenbosch. It was beautiful, autumn colours painted the landscapes, the red wine was wonderful and we were thankful. Grateful that it is year on. Grateful that we completed the treatment journey, was blessed with a clear MRI Scan in March 2013 and that life reflected how it was prior to May 2012. We have both been working hard, keeping fit and keeping our focus on the immediate future.

But that night it suddenly grabbed me. It all suddenly felt too much. The memories were all too real and dragged me to the ground. It was just awful. Awful, awful, awful. No silver lining, no moment of meaning, no inspiration, no affirmation of life. Drained empty. Fragmented and hollow. I took a hiding and needed shelter. I believe it was grief. I was struck down by
grief of what I lost. Of course there are so much that I did not lose – my family, my life, ability to work and to be productive. And we were touched by the kindness of people who cared and prayed for us. But it robbed me of my illusions of invincibility and good health, my sense of self and being in control of my well-being and abilities, my delusions of immortality. Maybe it killed off those parts of me that I had to let go off, but never had to time or awareness to strangle.

It would not have been the route that I would have chosen, but maybe grief taught me that it is not always about my choices. My choice might only be in the ways that I come to terms with where my life took me. My choice in how I love my wife, my girls, my family and friends. How I engage with my colleagues, the people I consult with, the random strangers that I pass and the world around me. How I find my own path amidst the uncertainty that comes with a brain tumour and the emotional ripples it leaves. How I find my strength in faith, friendship, hardship and discipline. How I stand up when a wave mauls me into the sand. And that I will do.

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