Category Archives: My Brain Tumour and I

Once I was 41 years old

In a wink of an eye. It truly is remarkable. It was the seasonal changes that reminded me. Four years ago, May 2012, the nights were getting darker and longer, the days more misty and gloomy in the autumn light. Working hard, probably too hard. WorkingIMG_1535 hours were stretched into the night and my commute home most often passed family homes where supper was served. And then it stopped. Out of the blue, out of the dark.

My brain tumour’s surprised arrival followed my first ever half marathon (a good one) and a second half marathon (a struggle) two weeks later. I was fit, healthy and our family was settling back into a routine following our return from England 18 months before. Life treated us well, with only run of the mill challenges. Nothing dramatic. Kids at school carving their own marks in discovering their identities in a South African lifestyle. Anneén and I  finding ways to integrate our learning curves from abroad back into systems familiar from long term memory. IMG_1604

And still with the good and the lovely came the unexpected. Loss of consciousness whilst driving on the highway. Waking up under hospital lights. First sight was Anneén’s tears. Comprehending her words, but it did not make sense. Seizure? Brought here by ambulance? Really? But it was true, despite my IMG_1582amnesia. And so the journey started. MRI Brain Scans, differential diagnosis. New differential diagnosis. MRI Brain Scan and craniotomy aka brain surgery. Chemotherapy and radiotherapy.

And in between I ran. Not away. Not in flight, even though at times in tears. But I found running as a way in between chemo sessions to find open spaces, open mind space. I ran to feel my heart beat, blood in muscles and a sense of moving forward, moving on. It was life affirming. Death denying. Even though “mortality” was suddenly written on a white wall.

When I was 41 years old, the seasons changed in our Wine-lands. The vines lost their green coats, changed into golden, red and brown outfits and were then blown apart by autumn winds. The bare vineyard fingers were exposed, like skeletons. Winter was coming, but so the knowledge that the seasons change. New life will return to the brown vines, crooked in in the morning light. New red and black fruit will return, plucked into baskets and transformed into wine. A new life, a different life. IMG_1436

I am turning 46 soon. The seasonal changes includes us, make us aware of life’s ongoing journey and routines. What will follow around the next corner, over the next hill or within the mountain forest. I am not able to tell – a true blessing.  But I can stand still on my way. Take a deep breath, close my eyes. Hear the wind in the pine trees, smell the dusty roads between the vineyards, see the excitement in our dogs eyes. Breath out. And run.

 

 

 

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Running the Challenge

It is an easy excuse, but the winter months prove a challenge for my running and fitness endeavours. Up to the end of May I have been on the road and muddy tracks several times per week, taking the dogs with me to satisfy their feverish needs to explore the close-by vineyards and our local forest area. My fitness was on a positive upwards curve and I felt in good form. But June and July saw a white flag instead of running shoes. It had been tough in the cold and wet mornings and by the time I arrive home in the evenings, the sun had long gone to warmer climates.

At least there were a couple of runs, in the hope to hold on to some shape of good intention and a tad of fitness. Last Thursday, due to some misunderstanding of dates and days, I accidently had the day off. Loved it for having to do neglected odd bits on my own, but income-wise inconvenient timing. However, it provided me time to take the dog’s running harnesses off the shelf and to enjoy the flood of energy and excitement when they heard the little metal clips calling. To them this is a calling to an hedonistic hour, the pleasure of exploring the outside wilderness where grapes and pine trees grows, where smells and unexpected encounters of fellow canines are “like the best thing ever dude“. Off we went. They loved it. I suffered. The 7.4 km earthy tracks killed my enthusiasm and entered the disappointment of failing in my exercise aspirations.

Tiger Trail J-hoek 2013 II

Luckily there are second chances. Yesterday I took on the tarmac up Blaauklippen Road, past several vineyards and wineries. Running on my own is probably a bit selfish towards my usual running companions. But it allows me to focus on my pace, my posture and to focus on well known distant markers along the way. Crossing the Blaauklippen stream is at 1.4 km. The sign past a small restaurant is my 2.5km turning point when I do 5 km short run. But I had the strength to carry on. Pass the Blouklip turn-off (useful for my Strava challenge) and up the steep circle climb towards Dornier, Kleinnood and Waterford. A good run and knowing that heading back, long stretches of downhill awaits.

There are several things I take away from a good run, like yesterday’s. I completed 8 kilometres and ran it at a satisfying pace (recall of recent laziness). It provides a sense of achievement and knowing I can shake of those couple of extra annoying numbers the bathroom scale throws in my face. But more, it provides comfort. Knowing that I can run, despite past seizures and that bugger of a tumour. That there is always a way to get back up when you feel down and out, or when live gets too comfortable under the warm winter blankets. The challenge is to run and I have to run those challenges. Not against anyone, but for myself and for my family. To stay well and healthy.

Another run coming up in 23 minutes’ time. Not one for the running shoes or with our beautiful dogs. A MRI Brain Scan awaits. A different challenge, but one I can’t shy away from. So wish me luck as off I go.

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UnreLenting

There may different reasons why a blogger may be neglecting his patch in blogger-world. It could be due to changes in his or life, such as improved health, a career move or another family member arriving. It may due to unfortunate events, such as poor health, strain from being a caregiver or increased commuting time. In my case, it has been due to working hard again. Actually, I want to label it. I have been blessed with the ability to work in my profession following the visit from a brain tumour, a craniotomy (to remove it) and a couple of seizures.

I am well aware that some of my fellow travellers, survivors and fighters followed a similar path of recovery, but some have not been so fortunate while others are slowly finding their feet in the lives they embraced before. I may be incorrect in my recall of Freud stating that the two meaning activities in life are sex (i.e. meaningful relationships) and work. In part I agree as I have seen the consequences of the lack of these and how it can add to experiences of anxiety and depression. However I prefer the idea from the old Jewish wisdom writers (from the book, “When Bad Things Happen to Good People” by Harold S. Kushner) that a meaningful life involves, “To live, to love, to learn and to leave a legacy“.  But meaningful living does not only mean saying yes to what is good and beautiful. It also requires the ability to say “no”.

What I found beneficial is to have structure in utilising the gift of saying “No” to myself or “No thank you” to others. For me Lent provides such a structure, given that it is time dedicated (amongst other things) on sacrifice. It is not only within the Christian tradition that the concept of fasting and sacrifice is embedded. Within Muslim (Ramadan), Jewish (e.g. Yom Kippur), Buddhist and Hindu (e.g. Shivaratri) faith traditions times are allocated to focus on abstinence and celebration. These are often based upon remembrance of historical events or in preparation for festivals or significant events within the religious tradition.

Red Red WineSo my commitment for Lent 2015 involved giving up alcohol and sugar. 40 days without while I live among the beautiful vines and wineries of the Western Cape in South African and I savours the flavours, tastes and quality of a good Shiraz, Merlot and Cabernet Sauvignon. So to pass on the enjoyment of these felt quite daunting. However alcohol was the easy part.  But I realised how deceptively sugar creeps into our relationship with food. Even though I run often, eat healthy, don’t drink soda drinks and in general have a limited sweet tooth (a black Americano, no sugar kind of guy), I caught myself a few times popping something sweet into my mouth. Realisation 1: Abstinence requires focus.

Realisation 2: Sacrifice comes with benefits.  This not includes losing weight and saving a bit of money. On a deeper level it provided an understanding of what I am capable to  do and that the ability to say no does not have catastrophic consequences. It taught me the worth of keeping the balance between yes and no, between please and no thank you. Sacrifice does not only exclude foreign substances, but it challenges our internal dialogues about wants and needs.

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The Irony

It is quite ironic to look back at my last post and my reflections on how quiet life was. Posted in March (2014), there was no reason to complain, no reason to carry the burden of concern and life was providing more positives than challenges. How quickly things can change when the curveball comes flying towards you.

Only 3 weeks later and the baby sitter was booked. A relaxing night out for the two of us in Stellenbosch. With autumn delivering beautiful evenings we started with a stunning glass of red at a local wine bar, followed by a tasty meal at a traditional South African restaurant. As we still had some time to procrastinate our home coming, we called up a mutual friend. As she was in between working on paintings, we were got comfy in her studio/flat for coffee and chats. All in all, exactly what the doctor ordered. By the time we got home and had the kids in bed, it was truly time to slumber contently after a good grown-up evening about town.

It feels unusual to wake in the middle of a dream and the dream-like figures are lingering on against your bedroom walls. However, when the realisation dawns upon you that they are paramedics who are calmly bending over an ambulance trolley, unusual turns into surreal. It takes a step up with the awareness that you are the patient strapped on their ambulance  trolley. It was a seizure. The first I had in 2 years. The first since my brain tumour diagnosis in 2012. In my sleep, on our bed, without warning. The only difference this time, was that I was aware of Anneén being there and while being wheeled out of our house, a good (doctor) friend standing with and comforting my eldest daughter who woke up during my epileptic commotion.

I was much clearer about the rest of the events during the early morning. The red and white ambulance parked outside, they journey to hospital and the doctor and nursing staff who checked me out. I actually felt clear in my thinking. Also clear about the pain in my right shoulder. More than once I was asked if I fell out of bed. No. The whole thing (according to Anneén about 20 minutes in duration) happened while being in bed. I was discharged the next day, luckily a Sunday, feeling more emotionally shook-up than anything else. But my whole body was aching from the power surge that shot through my muscles. Mostly so my shoulder.

Skip forward a few weeks and a few physiotherapist sessions. I am at the orthopaedic surgeon’s office with my scans and sonar results. Well, I was not pregnant. At least that part was easily ruled out! But I fractured my shoulder. Yip, not needed to fall, bump or run into something. Apparently the only way you can break any bone in your body with only using your own strength is by having a seizure. Thus I shook everyone up at home and now a shoulder operation was awaiting.

Yipee yah hey!

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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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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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