Monthly Archives: August 2012

Going Back West

[Cue Music]

Going back west
Yes I know I’ll make out alright
Going back west
Where my music’s playing all night
Going back west (going back west)
I think I’ll do alright

I have always fallen back onto music. In times when words fail or when my fingers don’t find the keypad, the CD shelves are reassuring close-by. Glancing at of them now, there are obviously some embarrassing choices I have made (I blame the 80’s), but also some dear favourites that have been with me in times of uncertainty or heartache. Pulp, Eddie Vedder, Leonard Cohen, Alanis Morisette, Bob Dylan, Mumford and Sons, Bruce Springsteen, The Cure, INXS, The Cranberries, etc. etc. are all tuning their instruments and warming their vocals for that moment to intervene in our reality that are completely unfamiliar to them. And yes, there are (private) moments that even Boney M is called on stage for some kickass inspiration. Today is such a day. Going Back West is the song the doctor ordered.

It really is just not flowing. Words are somewhere else. Maybe it is just not a word day. It is probably because I am heading back to hospital later today. It is nothing overly serious, just not the type of thing that make you want to smell the flowers, write poetry or paint still lives. I would rather find a little sunny corner to hide away in. Someplace quiet and safe, where all is well and my good medical colleagues are playing with their children. The operation is nothing as major as the craniotomy I had before (when the tumour was removed). The issue at hand (head?) is that the swelling did not subside over the past 2 weeks. This indicates that the pressure monitor that was connected probably left a little “leak” that needs to be repaired. Unfortunately this can only be done through opening the wound again and getting underneath the bone structure of the skull. The good news (and yes, there is some) is that I would probably be home again tomorrow.

So the journey continues and the things we learn along the way mount up. For example, we met an oncologist yesterday to talk about radiotherapy and chemotherapy. This is the next process following the surgery to “blast” any cancerous cells that could not be removed. These cells are such small molecules that technology during surgery can’t pick them up and therefore it always require some follow up intervention(s) to deal with what is left. What we did not know is that radiotherapy would be 5 sessions per week for 6 weeks once I am physically well enough. Although these would be short sessions (each session lasts for about 10 to 15 minutes), it is thinking about all the practicalities and how to manage all of this. The word “time” comes to mind, as does the word “work” (given that I am still officially on “sick leave”). I know, I know, don’t rush ahead! Get well first! Priority is your health. It is just such a different and new place where we are that these words and ideas take some getting use to!

I need to go pack something. Will speak soon – promise. Hopefully words will be at hand to describe how things have developed. If not words, I will get some pictures, lyrics. Which reminds me of this one I took last weekend at Babylonstoren. I think these are the sunny places I would love to hide away at on days like today!

Image

Going back west
Yes I know I’ll make out alright
Going back west
Where my music’s playing all night
Going back west (going back west)
I think I’ll do alright

Advertisements

19 Comments

Filed under This thing called life

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.

17 Comments

Filed under My Brain Tumour and I, Psychology Reflections

Coming up next: Brain surgery

I never would’ve imagined a sentence that combined the words “my” and “neurosurgery”. Are those really my brain scans? Were they not mixed up somewhere? Nope, apparently not. I am scheduled for a craniotomy for tomorrow afternoon.

I know that I am not unique. What right do I have on a life without challenges or even suffering? Life’s bag of curveball might not have names on it. That’s why I have never even considered to ask, “Why me?” My friend W.S. send me a bbm to update me on his wife’s breast cancer treatment. My friend Graham died of cancer earlier this year in Devon (UK). I read about the death toll of a taxi and a truck that collided last week. My cousin’s wife had brain surgery on Thursday past. On a daily basis at my practice I hear about people’s struggles with depression, anxiety or the unhappiness that haunts their relationships. So, I ask myself, “why not me?”

It just feels unreal. Unreal, although the nerves (14 hours to go) might indicate it is real. Maybe it’s because I am symptom free. At my last visit, my neurosurgeon (another unlikely self-reference and conversation stopper) asked about headaches. I was not sarcastic when I replied, “Well, there has been two in the last 2 months. I don’t do headaches”. I have not had any further seizures since that eventful night on the 17th of May. No Hollywood nose bleeds. No moments of confusion, blurred vision or completely inappropriate behaviour (not anything that would be regarded as abnormal for me). I ran two ½ marathons in May and have clocked nearly 400km running kilometres since February. Basically from the eyes down, I am really very well!

I have always considered myself fortunate. Things always had a way of working out or I managed to land on my feet when the fan sent the paw-paw flying. Apart from one very tragic event in our family 21 years ago (maybe I will tell you one day), I am thankful and blessed on the opportunities that life has provided me over the past 42 years. Living in both South Africa and the United Kingdom has been good and I am still amazed at the work and life experienced that Anneén and I received. The people that we met along the way became friends; stunning people became good friends. I can’t identify with Michael Astrov, a character I once played in the Anton Chekov play “Uncle Vanya” in London (it was all amateur dramatics, but we took it very seriously). He said, “In principle I love life, but this particular one?”
[As a side note I noted a new version of Uncle Vanya with Cate Blanchett as Yelena … I wonder if they are still looking for a Astrov?].


OK, at this point you might think I am OK with it all, he sounds reasonable on top of everything, no complete breakdown or emotional sloppiness. I actually feel quite calm as I write. I can’t avoid what lies ahead. I need to jump into the void and trust the hands, ears and brains of those holding the medical tools. Maybe holding my life, my future. Yip, that’s a freak-out thought. Hold on, need to get back in the “here and now”, back into my safe place – my rational side. Think I’ve got the balance back.

[The next bit is not for the faint hearted – only the brave and those with love in their hearts are allowed to enter.]

The fears are still hunting in the shadows and I don’t want to pay them too much attention (remember not to feed them). But they are fears that are new to me. The cloak of invincibility has always been strong, kept them at bay. But now, they whisper things in the dark. They know what to say to make me sit up in bed and feel my chest pushing in on me. If I was single and not a dad, they would not be able to do this, the cloak would have protected me. But now, I hear them and the fear by-pass my logic. Strangely the scary words are mostly not about me. Off course I worry about the impact of the operation on me and who I am. However, the whispers of not seeing my girls growing up, not growing old with Anneén…
It is raining. It is soothing. The fears don’t like to get wet. Neither do they like love. Michael Leunig’s little poem is a great help in moments like this.

There are only two feelings,
Love and fear;

There are only two languages,
Love and fear;

There are only two activities,
Love and fear;

There are only two motives, two procedures, two frameworks, two results,
Love and fear,
Love and fear.

Time to go to bed. Checking on my two little girls. They sleep like angels. A variety of soft animals sharing their pillows, look sleepy at me. I just feel love. No need to go to any safe place, I am already there.

15 Comments

Filed under My Brain Tumour and I, Psychology Reflections, Running (The Just Dump It Project)

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!)

16 Comments

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