Tag Archives: Brain Surgery

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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The Ides of March

It had both. The incredible high was followed by the unexpected sucker punch the next day. The cliché of an emotional rollercoaster rocked me up to the top and then ran me into the ground below. Although I know that is how stories often flow, it took me a few days to recover. But let me start with a question, “Can you become friends with someone in 2 hours?

De OewerIt was a wonderful high on hearing that my MRI Brain Scan came back without any sign of tumour. The message was clear, “Live your life”. I wrote about it and received wonderful responses from friends, family and my colleagues from all over the world who read my blog or those within reach of a phone call. It was a wave of positive energy and we rejoiced. We called up the locals and celebrated at the De Oewer restaurant next to the Eerste Rivier. There was bubbly, laughter in between conversation and a feast to enjoy. Children were running, climbing, playing and flowing with the energy of innocence. It felt like the rise of a new sun that chased away the dark shadows of fear and anxiety. I felt connected to Anneén and our girls, connected to my friends and family, connected to my colleagues who unselfishly walked this road with me. The moments were golden underneath the oak leaves and besides the cool sounds of running water.

I met Gerrit once towards the end of 2012. It followed a suggestion from a colleague who knew him. His brain tumour was removed in 2007 and has been working at the Theological Faculty in Stellenbosch – my old stomping ground from the mid 1990’s. As Gerrit stopped driving, I picked him up from home, about a kilometre from ours. A breakfast at the D’ Oude Bank Bakkerij at the bottom of Kerk Straat, while we shared our stories of diagnosis, operations, survival and reprioritising our lives. Gerrit was in hospital for his craniotomy during the 2007 Rugby World Cup, mine was during the 2012 London Olympics. His tumour was hiding in his left temporal lobe, mine left frontal. We clicked. I could relate to Gerrit and his journey that started 5 years prior to mine. He came to the Cape and was given a position at the theological faculty, even though his background was in journalism and he was open up his medical status. We met for a few hours and it felt like we have been friends for much longer.

De Oude Bank BakerijWe spoke and we realised that I am 2 days older than him. Gerrit spoke about the Argus Cycle Tour he did with his son and how grateful he was for this opportunity. He spoke about his difficulties with word finding and how students will initially laugh when he tells them about this. But then he tells them again and they believe. Gerrit spoke about friends and I realised that we have met them, drank some good wine with them. Gerrit spoke about his love for his wife and sons and how he did not want his sons to worry that “this” might happen to them. Gerrit spoke and often gaps in sentences appeared, getting stuck for a specific word. But he smiled and we know it is there somewhere; it just does not come to the surface. That brokenness contributed to the truth and the integrity of present moment. There is a crack in everything; that is where the light comes in.

The day after my mile-high moment on the 13th of March, the news that broke my heart. Gerrit died two weeks before. Our GP told Anneén. A month before I made contact via SMS and Gerrit’s wife replied that he was deteriorating by the day. I was hoping that it might be due to treatment making him ill or something non-threatening. But Gerrit died. Somehow it did not upset me at first. Maybe I had to make sense of it first; logic always being my first line of defence. I send a message to Gerrit’s wife and she kindly replied, even sending best wishes to me. It was the day after, a Friday. It felt as if a heavy hand pulled my heart into the earth. I was as down as was I was elated two days before. The message of a second chance to live was followed by the messenger that death prevented my short lived friendship with Gerrit. There would be no return for the breakfast I owed him, for our broken words to again spill out of our brokenness to find meaning and truthful reflection on being human and our mortality. And I only met Gerrit once, we spoken over the phone twice. I am not his wife, his sons or his parents. I am not his longstanding friends or those who asked about his well-being at work. I was just his friend for a brief interlude. And I felt sad and lost.

Today I don’t want to celebrate the fact that I just finished my second last course of chemo or the good news about my recovery. I want to celebrate meeting Gerrit. I want to remember the brave man who smiled at his missing words and the kindness in his eyes. The love he expressed for his family and the courage to make the most of the hand he was dealt. Salute!

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A good day to live (aka the clean MRI Scan)

Did it take so long last time? I have had a few, but did it last for “at least half an hour”? Maybe my attention was directed on going into the tunnel previously. I have had MRI Scans at 3 different hospitals now. At Stellenbosch when I was admitted following my first seizure in May 2012, then Somerset-West due to the super-duper scanner to aid diagnosis, another prior to my operation and finally at Panorama to mark out the mask I was due to wear during radiotherapy. Now it came full circle. I am back at  radiology in Stellenbosch to re-scan, 7 months after my craniotomy and the surgery to remove my unwanted Oligodendroglioma. I know, it sounds like a tumour with a degree and a shotgun.

Dressed in a purple frock I lay under the bright hospital lights. An aweful pop songs plays out in the background. The scanner table supporting me feels narrow, the blanket over me soothing. But it does not calm my fear. I grip the tube leading to the small rubber balloon that resembles the pumpy bit of a sphygmomanometer (that measures blood pressure). However in this setting “Pumpy” is my weapon against claustrophobia. You did not know? Yes, I am scared of small spaces – have always been. And while I am at it, I might as well admit my fear of heights. This dates back to before my sense of invincibility was shattered in 2012. Before I was struck out of the blue with the scan images that showed the tumour in my left frontal lobe.

MRI ScannerShe is friendly, reassuring but professional. Her words of support are balanced by skipping through the instructions and a final question about anxiety. “Occasionally”, I lied, feeling the slight dampness in my hand holding the panic button. “We are just behind the glass”. Her smile was more reassuring than her words. I breathe and close my eyes. I will not repeat my previous mistake. Don’t keep your eyes open while sliding into the scanner. Not again! Even though the flat table is mounted low when you get on, it raises up before moving electronically into the tunnel. The closeness to the “roof” triggered my anxieties before and it was only moments between the closing of my chest, my heart kicking against my ribs and my fingers closing in on the panic button for escape. So I close my eyes and feel movement into the open mouth of the machine.

Apart from the “button”, I rely on breathing to calm me down and my imagination to drift into creative ventures. My mind’s eye luckily opens up colours at first, then ideas and memories. I feel my body resting heavier on the surface beneath me, while I am surrounded my noises that sound like a broken drum machine.

Without warning I was moving out. The light on my eyelids told me I was out in the open. Through my ear-plugs I could hear a mumbling voice. These are good to keep the thumping and humming noises at bay during scanning, but do not benefit communication. Furthermore is difficult to make the words out as my head is kept steady with two rests on both sides. Oh yes, time for the injection of “contrast material” that enables a sharper contrast on the scan. Again I close my eyes after the cool sensation in my arm replaces the sharp sting. Breath. Think colours. Drift away to a foreign place out of tunnel-land. Relax.

I carry the CD containing images of my brain in my bag for the next 24 hours. Unopened it stayed. Strangely it did not concern me much. Anneén and I spoke before going to bed about the upcoming appointment with Martin (my neurosurgeon) and both felt at peace. We go over the facts. I have not had further seizures since the first ones; my language skills appear to be intact, no significant praxis problems and my executive functions (i.e. multi-tasking, planning, taking initiative) is as bad as it has always been! And through writing my blog and steadily increasing my running distance I feel a sense of achievement and connection with the world around me. Maybe it was our talk, maybe the awareness that I had no control over the messages encrypted on the CD, but I slept like a baby prior to the day of the big reveal.

Martin is younger than us, but he carries calmness in his eyes and words. I don’t doubt his knowledge or expertise. The fact that he has been inside my head twice before does forge a strange connection. He does not rush when he opens the scan images, both from yesterday’s scan and the ones from before surgery. “It looks very good” he says, “There is a little scaring from the operation and the radiotherapy, but no sign of tumour”. We look closely at the computer screen as he indicates a ventricle that has returned to normal seize and to where the brain has pushed towards the front where the tumour was removed “to fill up the empty space”. I ask what I need to do from here on. Should I scrutinize my diet? Should I watch my alcohol intake? Do I continue to take Epilim? Martin reassures, “Continue with the medication and complete the chemotherapy, but live your life as if you are cured” After all we have been through, this fantastic news seep in slowly. It is gone, no tumour left.

I often look at brain scans with my psychiatrist colleagues at work.
However it is different knowing the one looking back is your own.

I wish I can paint a smile on it.

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And so the Mayan cookie crumbled

After a moment of uncertainty, my girls were in the safety of my arms.
“Again! Again!” they shouted.

Hartenbos Waterworld

Hartenbos Waterworld

Earlier this year, prior to my brain tumour issues, they sat on my lap when we went down the “big supertube” slide. However at the time they were not so keen on it and prefer to enjoy the smaller tube and more “subdued” waterslides.

Now, 9 months on, we were back for our summer holidays in Hartenbos. After plenty of rides on the “Junior Supertube” and with the new confidence they found playing in the waves, I thought we may try the bigger ride again. However this time, with life jackets on and daddy going first. I left them at the top with a bit of uncertainty and some anxiety to take on the new challenge. My 7 year old (nearly 8) came flying out from the tunnel first, unable to hide her anxiety, her eyes trying to find me in the pool and tears swelling up. My five year old found a moment to grab her nose before been flung into the white stream of water. Both of them were in my arms within seconds given the strength of the water pushing them towards me. The tears quickly vanished and screams of pleasure replaced all signs of fear and apprehension. “Again! Again!” rang out as a war cry against those feelings of uncertainty, as a spontaneous team credo to take them to similar heights of excitement.

It is moments like this that all the uncertainty, fears and times of darkness get washed away and their young voices conquer and replace the voice of anxiety that occasionally haunts my mind. The past year’s memories were recycled. It is the pure joy and excitement in their eyes. Not only from the adrenaline rush from the water and speed sliding down, but from conquering a challenge they didn’t know they were able to do in March of this year. It adds to my life.

Vigo and I enjoying the waves

Vigo and I enjoying the waves

It is similar to the joy and exuberance I get from facing the challenges that the ocean roles towards me. To dive underneath or through a white rolling wave. To jump over a crumbling triangle of water moving towards you. On the lookout for the one that will grab hold of you, embrace you and run you towards the white sand.Those experiences fill my senses and consume mind to the extent that no other thoughts can enter.

Life is present in these moments. In the water’s power, the saltiness in your mouth and nose, the moment of lifting your head for air gasping for air and the moment of pure happiness in my daughters’ eyes. Again! Again! I shout.In between these life affirming events and today (23rd of December), the Mayan’s prophecy about the proposed “End of the World” came and went. With all respect to the Mayans and all that they have achieved, it was not very apocalyptic or a very unusual day. Apart off course from us folk in the Southern hemisphere experiencing the shortest night, as we do ever year with the summer solace.

As a teenager the final chapter of history of mankind and the signs of the last days (eschatology) as well as the “uncovering of knowledge” about the final days (apocalypse) held me captive. I have however since shifted in my thinking and beliefs about this and cannot find any other word to describe my position about these things, be it Mayan, Nostradamus or from any fundamentalist position, as “vaguely amusing”. [I could write more on this, but in order to not venture too far away from my original script, not today!]. I find comfort in the concept that we may see the end of an era or the end of a rule (of say an empire), but that this world will only come to an end when the sun finally gives up the ghost.

Thus, the moments that we have with each other, the times that we capture with our senses, the wave that we ride onto the sand, the Eureka moment, when we conquer our fear, the first time we go down the big one. That moment that is present. Don’t I care about the future? Of course I do. My biggest anxieties (especially post diagnosis) relate to future. As do my dreams. I firmly believe in the power of our dreams, in becoming and growing into who we are meant to be. All of that relate to the future. But I don’t believe that all of a sudden the world will be without electricity or mobile phone signals. That we will be hurled into darkness and mankind be wiped off the planet. Not this week anyway.

The future is import, but it’s not under our control. The past is precious, but it does not pre-determine who we are or our future. We have the present moment that the past has given us and of which the future is expecting a response. We have moments that take us on an exciting water ride and moments like yesterday when I was attacked by bees while mowing the lawn (I am typing this with one swollen eye!) and then putting up the Christmas tree as a family. We have this and we can choose what to make of it. Even with one eye half closed, I will shout out, “Again! Again!”

So the end of the world passed us by and everyone that I love are accounted for. I don’t know what tomorrow will hold, but I am planning to give Christmas gifts to my wife, my daughters and my parents who are visiting. I am hoping to hear their laughter and to see the surprise in their eyes when opening their presents. I am hoping on and planning for a healthier 2013, but before then to enjoy the remaining moments of 2012. May you enjoy and be blessed with the same!

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Chemo Again

There has been a break of 3 weeks since I completed my radiotherapy and first 6 weeks of chemotherapy. My chemical holiday! It was good to have the break and not do my daily 40 second walk to the oncology unit across the street. If I turned a blind eye for the events of the past 6 months (I missed my 6 month anniversary!) as well the bit of hair loss on the sides of my forehead (not too bad I must add), it almost felt like life returned to normal. I was driving, working too hard, meeting friends for birthday lunches and trying to sort out a few plans for the summer holidays and Christmas.

But, the day had come to start my second round of medication . This time the higher 400 mg gram dosage for 5 days on, three weeks off, 5 days on, three weeks off and so forth for 6 months. I feel a bit like a patient again. Luckily no nausea, but swallowing pills are still not my thing. And it is bringing back the fatigue, or I am just working too hard? I don’t know, but I am cutting open the Temodal packets and looking at the 4 tablets in my hand. Each of them, costing just slightly less than what we pay our cleaning lady per month (for 8 days per month, excluding extra time with our kids). I should be grateful for the treatment that I am receiving, make no mistake I am. Both for the meds and the medical aid that covers it. However, it still shocks me. Medication is obviously something does rank up there with costly luxuries, but it is should also sustain and save lives. I am aware that my fellow countrymen might have access through state hospitals or alternatively to generic options. But still. In a country where the life expectancy is 52, you should not pay R21918.20 for 20 tablets per month. Maybe I am mixing my causes, but it appears like the gulf between capitalism and humanity is cranked further apart by cost for things like this. Or is that just the cost of living?

I am feeling like a patient again, but not so much that I don’t want to fight on …

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Can Whales get Tumours?

Off the coast of South Africa, at least 37 species of whales and dolphins can be found. This fact blows me away. 37 species?  Most of these (especially the whales) are found in the about 500 kilometre stretch between Cape Town and the Garden Route. Tthe most famous are the southern right whales, humpback whales, and several coastal dolphin species. These are joined by African penguins and Cape fur seals, with the obvious big and small human shapes enjoying the seawater and surf.

A few blogs ago I mentioned a visit to a small town called Betty’s Bay (not far from Hermanus, the whale capital of South Africa). It was here that I experienced one of those amazing life affirming whale moments. I was standing outside on the stoep (our local word for porch) when I suddenly saw a black movement in the water. I just yelled, “Whale!” to get my family’s attention, grabbed my camera and run down towards the sea for a close-up shot. Now, if you ever find yourself in a similar situation, I leave you with 2 recommendations. (1) Familiarise yourself with the territory and (2) Footwear, footwear, footwear. Unbeknown to me was that the 50 meter between me and the shoreline included a gravel road (the easy bit), thick undergrowth of fijnbos and surprisingly a stream (due to a lot of recent rain). That was even before the rocks that provided the soundtrack to the experience and lifted a salty taste and smell into the air. This short, but tricky, distance was made complicated by my foot attire. The old faithful pair of Fatface flip-flops was getting slippery and muddy, making my rock scramble probably amusing to look at, but not fun when trying to run in a whale.

My guide in all this was Anneén standing on the stoep lookout. Shouting directions and pointing to where to scramble. I then realised that “nearer” does not translate into “better view”. Every now and then I would see water spurting out, a black back or bit of tail. It was a truly amazing experience that I tried to capture on camera. However, each photo appeared like an ocean still-life, with no evidence of whale. To make matters worse, when I returned home, I was informed that there were 2 whales … I did even not notice the second.

The next day in Hermanus, we had breakfast with the most amazing backdrop. Not only did we have a 180 degree ocean view, but we could see several whales (or bits of them) in the bay. Some swimming with new offspring; showing of their tails and playfulness. Luckily they were far enough away for me to even attempt to catch them on film!

Do whales get ill, do they get tumours?

I do not know. I have heard that they can get (oddly enough) dolphin pox and arthritis. Elsewhere I read that a whale stranding might be due to a boat injury or brain parasitism. However, the appearance of a very young whale on the beach with no sign of disease might be due to separation from its mother.

In the 1978 a book called “The Tumor in the Whale” was published. Rather than it being a collection of medical or marine scientific facts, it is about urban myths and legends. Its author Rodney Dale, a collector of mythical stories, referred to whale meat being sold in wartime England when other meats were scarce. The details of a “specific” person finding a tumour in his meat are quite gross (I would rather not repeat it ) and might be behind the rhyme, “Whale meat again; Don’t know where, don’t know when …” This is referred to as a ‘whale-tumor story’. In essence it’s a wild story with no truth behind it. The type of thing that happens to a friend of a friend of a friend.

A true whale story happened to us in 2008 while we were visiting my in-laws (we were still living in the UK at the time). Early one morning the local radio station reported that a whale beached nearby overnight. We took the kids and set off to witness this first hand. It was a truly amazing experience, obviously filled with sadness. The gentle giant looked healthy, almost as if sleeping. The only sign of injury or trauma was a small wound next to his right eye. Local fishery experts did not feel that it could have been the cause for its demise.

                       Image

From the outside, nothing else appeared out of place. Apart from it being a whale on the sand. And it not sleeping. It was still a memorable experience, to be able to touch a whale’s skin, to get a perspective on how small we are next to him/her and how these giants of the sea can be so vulnerable.

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Moments like these tend to draw us away from, out of ourselves. The moment that we encounter something different, unusual or beautiful. Events that place things in a new context or perspective. How we are small insignificant particles or how we can be instrumental in change and something bigger. These experiences can be quite mundane, like watching a gecko climbing up a wall. Someone walking past you smiling while listening to their iPod or the early morning sunrays reflecting off the dewdrops of vineyard leaves. It can be as life changing as the news that a healthy baby is coming. The beauty in these moments, even if they contain an element of sadness, touches something deep inside me. Feeling removed and connected with something so different. While knowing they must have their own moments of joy and suffering, their own experiences of anxiety or encounters with beauty.

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The 10 things I do not want to regret

It has been scary at times. And serious. I suppose when life enters any unknown territory, it can be or will be. Especially if the map states: “Brain Tumour”.

But all has not been serious. We’ve had our laughs (sometimes in-between tears), drank good wine with wonderful friends and appreciated beautiful moments that might have been lost before. It made us think about what is important in life. If you should read sentences that start with the words “Life expectancy …” that relates to you, you would probably do the same.

But let’s leave that type of serious talk for another day. The sun is shining in Stellenbosch, it feels almost warm, there are fluffy white clouds in the blue sky and we are edging towards spring. The season for new starts. So, some thoughts about priorities, or maybe I should say “The things I never want to regret”.

1.     Time with our 2 girls – when we were told that I have a serious illness, the thought that I may not see my girls (age 5 and 7) growing up or be there for them in future times, hit me the hardest. Of all my fears and insecurities that is the toughest demon to face. We cannot share the full account of my diagnosis with them, but try to use their language to create meanings that is helpful to them. An example is that “Daddy went to hospital for an operation as something was making him feel dizzy”.

Dad and his 2 girls

I came to appreciate the importance to steal moments that I did not in the past. Just, spending a few more seconds here and there, making them laugh, appreciating what they do and telling them that I love them regularly.

2.     Growing with Anneén – it so easy to take for granted that life will just continue in a certain way and that one day you will be that couple sitting on the stoep (porch). Suddenly there was a question mark, the certainty shadowed by doubt. I know that no one knows what challenges tomorrow will bring, but having gone through the last 3 months made it clearer that life needs to be lived with the ones we love, the need to grow together and to appreciate all of it more.

3.     Living a healthy life. I thought I was quite healthy this year. I ran two half marathons, enjoyed my work and was working hard, but in a balanced way. I never before had to take medication apart from the odd flu, cold or that dreadful chicken pox in 2006. Even my family tree reflects by large people living to a good old age and relatively few serious illnesses. All of a sudden, for some inexplicable reason, I was a patient, underwent surgery (twice!), was taking medication and supplements, and juicing vegetables and fruits. I need to and want to get back to embracing life, to exercise, to feel and eat healthy and to inspire others to do so.

4.     Being able to travel – at present I am content to stay local and get well. But I would love to see Barcelona, Rome and South America. But not only places abroad. I want to connect with more of South Africa again. Especially after 8 years away with only childhood memories of certain places we use to visit. I would love to show my girls wildlife and animals that are not kept in zoos, but that are roaming free.

5.     To be a better cook– I blame that old devil called laziness for this. Not only will taking on a more healthy approach to cooking be beneficial to my health, but I respect people

Lunch at Babylonstoren

who are able to think about fruit, vegetables, meat and spices and bring it together in a feast. I want to be one of them! Was wine on that list? Well, it is now!   

6.     To appreciate and enjoy the beauty of life – Life comes with its hardship (see “Brain Tumour” roadmap as example) and we suffer painful losses. But life and the world around us provide us with beauty, amazing stories and sensory input that are not possible on any other planet known to mankind. To breathe deeply, smell, listen carefully, touch softly and look closely may open up worlds within my world that I may miss. Carpe diem! That reminds me. I need to get to the sea more. We are so lucky to live close to the Atlantic and to be in the ocean remains one of my greatest pleasures and experiences of freedom.  

7.     To spend time with friends and positive people – It has been such a blessing to receive support and kindness from people both locally and abroad. I know this, and often spoke about it to clients and patients, but I don’t know how you deal with hardships on your own. Not that I think you won’t be able to manage some of it, but to truly get through it and to stay emotionally strong requires a team effort. Time with friends and small gestures has carried us when we could not carry ourselves or each other. 

8.     To see Leonard Cohen live – Is he ever going to come to Cape Town? Come on people, we have had all the other geriatrics!!

9.     To continue to love and enjoy what I do for a living – I have always value the importance of an occupation, to be able to love my work and having colleagues I can relate to. Whenever this was not happening in the past, I had to look at myself, evaluate my practice or ask questions about the set-up. I am very fortunate since returning to South Africa to be able to work at the set-up where I am, for the colleagues I have and to provide something to the lives of others remains a key priority for me.

10.     To drink good coffee and good wine …

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Still standing

There should be another button. Somewhere between “PANIC!” and “ALL’s FINE!”

But there’s nothing. I need more options.

I am somewhere in between, probably more towards “ALL’s FINE!”–based upon how I feel a week after neurosurgery (or craniotomy to be precise). But should I feel like this?

There should be another button. I’m still standing, feeling quite well. Even with almost no (head) hair and a long curly scar on the left side of my head. I don’t think I’m at “PANIC!” stations though.

Maybe I am going too fast. So much has happened in our world since the 17th of May. So many new events, terminology, fears and ideas, friends and shadows came into camp with my brain tumour that I might be out of pace with the rest of the world. Not only me, but for  Anneén and I our worlds have been turned onto its head, rolled down a hill and then tripped by a guy with a long stick trying to break into our garage. So, skip back a week. Back to Monday morning, the 6th of August 2012. Breath in.

Did I tell you I am a Clinical Psychologist?” It seems like I am out of pace again, but this is relevant. Don’t panic! Since 1996 I have worked in a variety of settings, both in South Africa and the United Kingdom. Entering hospitals and frail care units have thus never been a daunting prospect. I have always carried some invisible armour with me. It was academic knowledge, clinical experience, the reliance in a strong team behind me or, in drastic situations, an open approach to whatever might be flung in my direction (luckily these were very uncommon and at worst contained old sausages). I have been with people in dark places. At times with uncontained emotions. Or memories of past events that created haunted backdrops to their lives. At times I sat with them and their stories and listened to how anxiety crippled them or kept them captive from living into their potential and the world outside perceived borders. At times, it was just physically dark and cold. But these places, situations and people with all their pasts, presents and futures were not threatening. I was OK. I was the expert to help them and had something to offer. At the very least, I could be with them. Hold a hand, be present in their darkness or consult with the staff looking after them, call in a team with expertise and care. I was OK. No need for extra buttons.

But this Monday was different. It was I dressed in a hospital frog (should that be frock?!), with blue paper pants and wheeled off to the surgery ward. The staff members and medics were now the experts. They wore the friendly smiles, knew where doors are opened, which words to say, how long to stand next to me, when to quietly move away. They were in control and I felt comforted by them. I did not need a panic button, even though I was in hospital as a “proper” patient for only the second time in my life. The first time after the May accident 10 weeks earlier. “Don’t panic”, I told myself.

My anaesthetist was quite memorable. He chatted easily with me and was humoured by my good health history. “Never had it in your life before?” he exclaimed with a puff of some theatrical bewilderment. “We do get some unusual ones, don’t we nurse!” He was warm, friendly and made the dropping off (or going under) fairly unremarkable. Especially as he softy said, just before I lost consciousness, “Sleep well”. No need for a panic button.

Tuesday 7th of August. I am awake, might have been conscious the night before, but now I knew that I woke up. Even more; I am alive and feeling alive. The light through the windows behind me was soft. I had some awareness of rain falling. I was still here, on earth. I felt grounded, for some reason. Almost automatically my left hand went in search of the scene of the intervention, the bit above my left eye. Initially I thought, “They just cut my hair!”, but the plasters reached out to my fingers. They were friendly plasters, protective and like the medics, not sending out any dramatic signals. They were not saying that everything was fine, but not to panic. I felt I was in good hands and in good plasters.

I was very bemused a few years ago in Devon (UK), when we went to see a new dentist for a check up. She was everything that she had to be, but newly qualified (which was more an issue for her than for us!). I have never been bothered much by age difference when I work with clients or patients, but I know it occasionally create discomfort. When I see my neurosurgeon, I also wonder about his age. He is younger than me, but has a relaxed and knowledgeable approach that is reassuring. He has also referred me to additional opinions and my impression is that he is not intimidated by the input of others. I like that in a clinician, as I do in other people.

His view is that the operation went well, but that we will have to follow up with radio-therapy. Unfortunately, it is not solely an oliogodendroglioma as we hoped (the rare type), but a mixed oliogodendro and astrocytoma types glioma. As a few tumour molecules stayed behind, radiotherapy is therefore indicated to take out what unfriendly cells are still with me.

It’s not the best of news, it is not panic stations either. There should be another button. Somewhere between “PANIC!” and “ALL’s FINE!” Maybe it should read, “I am still standing”. For now, that feels enough. That and the support we have received from so many.

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Hanging on in my Story

I have never doubted the power of storytelling.

Maybe through writing the stories of us dealing with my brain tumour, I find some distance from it. Not that I become alien to the thoughts and feelings that I reflect upon. Quite the opposite. It is having a conversation with my fears, my dark thoughts, my demons. And this, somehow, brings calm, even bravery. Could it be literary exorcism?

My love for stories goes back to being a skinny boy with big black glasses. I loved, when we visited my grandparents in Warrenton (close to Kimberley), to get up early morning with my brother and found our way to my grandparents’ bed. There my grandfather (“Oupa Jan”) told us stories about his adventures. About his journey on a war ship to Egypt to fight in the Second World War. How flying fish would jump right across the ship (up to this day I don’t know if this is possible, but dare not Google it as it may destroy the magical image!). How Oupa once was a boxer and how he shuffled in the ring to land the telling blow. His stories created a world of wonder that lifted him higher than mere mortal in our minds. The truth was irrelevant, his stories mattered.

                 Image      

Me, in the early 70’s on my Oupa’s “farm”

And through my school years my story addiction grew stronger, reading through series of books about heroes and villains, young detectives (Hardy Boys, famous 5), science fiction and anything the town library could offer. Maybe it directed me to my occupation.

Years after I quit wearing glasses and resembled less of the skinny kid, the power of stories stayed with me. It was towards the end of 1997 when I met Marie. She was a blond medical student from New Zealand doing a few months’ practical work at Tygerberg Hospital. I was completing my internship in Clinical Psychology there, single and believed that love can conquer all. The psychiatric ward was truly the least romantic place in the world, but at this unlikely junction the attraction started. Although she returned to NZ not long after that, I was on a plane to Auckland early in 1998.

It was not to be the start of the greatest love story the world has ever seen. Two weeks down under and the relationship was also down and under. So, I was back to singlehood, in a foreign land with two expats (her parents) trying to figure out what to do with me, and an (still) uncompleted degree that made decent employment impossible (I was told so at a job interview). Luckily the family needed their house painted, was willing to take me on and paid me decent wages (more out of sympathy than the quality of my brush strokes). And so, with a 500 NZ dollars in pocket, road map, heavy backpack and abundance of optimism, my real adventure started. I went hitchhiking.

I spent 3 months in the land of the long white cloud. Most of this was on the road, in the company of strangers and soul mates. I was exploring both the scenic surroundings and my heart’s broken pieces and new beginnings. I swam with dolphins, had my jeans stolen, my heart broken (again) and went wine tasting by bicycle (just don’t try this).

When I ran out of road, money and time, I met up with Marie once more. It was good. We were able to be honest about what went wrong between us and how our expectations had a life of their own. I took out my map and showed her the black and blue pen lines around islands, the names of backpacker inns and the marks where I hitched rides. We calculated that in total I had 65 rides with people stopping to give me a lift to the next town or to wherever they might be going. What an adventure! Apart from the car, truck and camper van journeys, it also involved 65 conversations with locals, fellow travellers, truck drivers about who I am, where I am from, what I am doing in NZ, what have I seen, what do I think about politics in SA. And off course rugby – that cultural commonality we share. I am still thankful for Marie’s comment, maybe the best and only lasting aspect of our relationship. She said, “It is like telling your story over and over again, until you get it right”.

And now, less than 4 days before my brain surgery, I am listening to Leonard Cohen’s Hallelujah.  I often find solace in Cohen’s music as I do when sleeping behind Anneén’s back. It helps to keep those demons in their place. I think about my story and how it has brought me to this point. Was it me who wrote my story or did it write me? I don’t know. There is not much I know now. Like Rosencrantz and Guildenstern*, the two characters on the sideline, who stumbled into Hamlet’s story and tries to figure out what’s going on. It is easy to look back at my stories; scary to look ahead. Will I continue writing in the same way? Will I still get it right?

(*In Tom Stoppard’s play; also a great movie!)

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Filed under My Brain Tumour and I, Psychology Reflections, This thing called life