Tag Archives: coping

MRI Brain Scan: a crash-bang-bang course

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

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

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

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

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

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

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

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

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

Once more I am set free.

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The Tough Going

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

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

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

Wet Winter

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

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Brain Surgery – 1 year on

6 August 2013

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

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

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

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

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

 

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

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

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

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How Bad News Flows

Just a ringing telephone.
Just my mother’s voice on the other side.
Just another conversation about the week with a bit of this and bits of that.
Just good to speak to her, the same spread of topics. “How is everyone?
It was fine just like that.

But bad news infiltrates the normal flow of things. Unexpectedly. Unwanted. “Did I hear that Laurie has been diagnosed with lung cancer?” Out of the blue, into the cold.

Laurie was a classmate many years ago, a good friend and never a smoker. Despite little contact over the eight years while we lived abroad, he remains a dear friend. And I hate phrases like “good friend” being allowed in the same sentence as “bad news”. Even more when the bad news shadow push towards someone who lives in service of others and support their lives towards new meanings. Like my friend Laurie.But sometimes it merges into the same linguistic stream, creating a new reality that follows the telephone’s ring. In a few seconds the past is shattered with a new present.

It reminds of what Douglas Adams wrote in Mostly Harmless:

One of the problems has to do with the speed of light and the difficulties involved in trying to exceed it. You can’t. Nothing travels faster than the speed of light with the possible exception of bad news, which obeys its own special laws”

Bad news with its own special laws bends the rules and does not read the policy document. Like an outlaw, a deceitful prophet, or the fraudulent official. Bad news carries its own load of heartache and pop songs. Maybe a positive take on it, is that it can override the previous bad news edition. It makes the mouse we caught in our bedroom on Monday night, the power failure Wednesday and the 15 cm drop in swimming pool water on Friday appear like an eventful week, but its only humorous samples to be served at a next social event. Nothing more. But a friend’s diagnosis touches deeper. It wakes the existential me that wants good will, for good to triumph over evil, even world peace. It stirs those emotional places that I visit after dark, the memories where tears and fears frequent, and the heartaches that left scars.

British Library Gate ShadowBut the bad news shadow man can serve other functions. It waves a flag with a red question mark. Where am I? What is my focus? Who is important in my life? What am I suppose to do where I am now? It wakes us from our slumber and pokes us in the side. It raises the shadows that we have forgotten to confront. It is not the niceties of life that gets us through these times. It asks of us, like Job, what remains when I am stripped of everything?

Bad news in essence presents the question of meaning.

Bad news is not about what we have or what possession we might have lost. It does not deal with the fantasy of acquisition or our standing in the world. It takes us inwards, towards facing the mirror with our history and present portrayed in full detail and full colour. It takes us towards our relationship with all the parts of ourselves that developed throughout our journey through different times and places. It takes us towards what we love and loath about whom we are.

And it takes us outwards towards those whom we love. Those for whom we hope that they will take their cancer, their loss, their heartache, their heart attack, their unfaithful partner and that it will confront them with the totality of whom they are. Wake up the shadows that they have to confront, bring them closer to the meanings they have to find for their life. Be that psychological, spiritual, artistic, humanitarian, existential or within whatever framework you define your journeys. It requires the relinquishment of what is unnecessary, what holds us back and what allow the shadows to anchor us in a false reality. It might be status, it might be the drive for success, or it might be materialistic. Or it might be to give up the hope that the world is manageable and predictable. We run into bad news and it breaks our hearts. It takes the solid earth from under our feet and grabs the soft pillow from under our sleeping heads.

Being lucky might not mean the bad news will go away or fit into our fantasy that everything will be all right. Being lucky might mean that we meet ourselves outside the constraints placed upon us by our parents, our teachers, our culture or our fantasies about how life should be. Being lucky means becoming authentic, facing our shadows and watering our inner beauty. It might take us to showing love to ourselves and those we love. Then, to quote James Hollis*, we learn “that life is much riskier, more powerful, more mysterious than we had ever thought possible” and that the “world is more magical, less predictable, more autonomous, less controllable, more varied, less simple, more infinite, less knowable, more wonderfully troubling than we could have imagined being able to tolerate when we were young”.

*From “Finding Meaning in the Second Half of Life

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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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The Brain in the Mirror

I have been brought back to my writing pad, after an initial enthusiastic start more than a year ago. It is probably the realisation that writing is in the first place an inner communication in response to life’s curve balls that needs expressing. Seeing the letters and words flowing on my laptop screen in a way makes sense of the uncertainty and unknowing that confronts one.

I have always attempted to bring a smile or an alternative view to the table. Probably deep down, my psyche has always embraced the idea of the trickster or the modern-day clown, even in serious conversations in my profession as clinical psychologist. Although it can never exist (for me) without the framework of respect and love for my conversational partner and the realities and emotional experiences that inform their lives. As I have worked for many years with people with memory problems and/or dementia, my interest in neuropsychology and what I can offered for both clients and their families have developed my interest in neuropsychology.

This makes my current position so ironic.

For many years I focussed on other people’s brains and the factors that may impact on it or bring about change to it. However, it is now I who am sitting in the patient seat. The brain on the neurosurgeon’s computer screen is mine. And it is staring at me.

Let me go back a few steps.

Driving back from work in middle May, so I am told, I had an epileptic seizure and ended up in a barrier in the middle of the road. I am still thankful that no-one was injured or that I did not sustain any serious injuries. I was further told that I had another 2 seizures on the way to hospital and that I was unconscious for a few hours. All of this is completely blanked from my memory. Amnesia is what I would call it in my office. My first memory was of being wheeled out of a MRI scan and seeing my wife in tears looking down at me. It was so unreal, actually thinking about it, it still is.

Initially I was told that I must have eaten some contaminated (pork) meat and that it must have allowed a parasite to enter my body. Somehow this little alien found a place of residence in my left frontal lobe and I was in a hospital bed for a week to be monitored. I felt like healthiest person on the ward! As I have just completed 2 half marathons in May and have been running regularly, it felt more like  unreal, almost some kind of experiment as I did not have any more seizures and otherwise felt fine. However, the meds soon did the trick to make me feel awful!

After the initial course of treatment and more scans, it became clear that it is more likely that my new “best friend” was a tumour and not the alien parasite. A further 2 months’ waiting time, anti-epileptic meds and a follow-up scan were suggested to clarify the diagnosis. That happened this week and the news was not brilliant. We had the name giving ceremony yesterday and it is now officially called Glioma. Of academic interest is that my friend Glioma is quite a rare find as its full name is Oligodendroglioma. Not that the rarity of it is a comfort, I would rather that it gets extinct altogether!!

Anyway, that’s where I am. Questions about treatment and further interventions will be answered in time to come. But for now, I am trying to dress my tumour up as the clown and asking it to tell me some funny jokes.

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