Tag Archives: craniotomy

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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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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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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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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The last chemo tablet standing

And there it was. One out of the last 4 Temadol tablets to go. Even though my mind knew the relief to have reached this point, my body was not at the point where it felt it. The milestone can be celebrated on another day. But after the initial 30 days of chemo and radiotherapy and now, with one tablet to go, the past 6 months have been about picking myself up and then going into survival mode for 5 to 7 days, picking myself up again. Only one of today’s 4 left to go.

 

Thinking back, the running helped. In between the treatment stints, putting running shoes on and getting into running mode cleared my mind and my body felt stronger after been knocked down after every 5 day chemo round. I know that people respond differently to chemo. My experience was overwhelming fatigue. I felt the energy draining away and I had to work hard after each “day 4” to get going again. But I have been able to keep pushing myself. Going to work helped. Seeing my colleagues, meeting with clients and knowing when to take it slow helped. Grateful for the odd public holiday, like being able to stay at home yesterday on Worker’s Day to rest properly.

Most of all I am grateful to Anneén who took on so much more on her shoulders when I was down and almost out, when I could not be there for her and our girls. In those times when tiredness dragged me down, Anneén was strong for us. We celebrated when my last MRI scan came back clean and I celebrate her carrying us carrying us through tough and uncertain times. Thanks babes!

One last tablet.

Off you go.

Go do your dark magic.

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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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