Thursday, August 13, 2009

Return to the Scene of the Crime

Saturday 18 July 2009
The Quenera River to the right of me, Bonza bay

Very soon after I came out of surgery and was diagnosed I was told that at the end of my radiation and chemotherapy I would have three weeks of ‘holiday’. It was then that I had the idea to book myself into the St Frances Health Hydro (hyperlink) to recover from whatever the effects of the radiation and chemo might be. At the time it was just a notion. I had heard from different people that it was a powerful place of healing and in particular I knew two people who had made radical shifts in their lives as a result of having spent time there and being treated in particular by the founder, Ms Cowley. As I neared the end of my treatment I noticed that my holiday coincided exactly with the kids school holiday. Perfect.

So a week after my radiation ended on the 26th of June I booked myself into the St Frances Health Hydro under the healing hands and eyes of Ms Cowley.

Mention St Frances to anybody who’s been there or heard about it and they roll their eyes and say something about the food. I had heard about the ‘food’ so many times that I called Ms Cowley a week before I checked in to confirm that I would be able to eat hot meals in accordance with the principles of Chinese Medicine that I’m currently being treated with. She assured me that there would be hot options for me and that decided it.

The drive up to the Eastern Cape was incredible. There was the fiercest wind blowing the whole way from the Cape all the way up the garden route. We passed fallen trees often. The whole way it blew from behind. When we entered the Eastern Cape I felt myself expanding, like water being poured out on the ground.

I stayed in Grahamstown for two nights to ‘acclimatise’ and booked in on the Saturday afternoon. On the one hand I could run through a list of treatments, consultations and detail the meals we received and all the food we didn’t eat and the food we spoke about at dinner that we drove ourselves a little mad with. But words can’t capture the finesse of the experience. I’ve never had such a tangible experience of how powerfully the food I eat affects me. By the time I left a week later I felt so finely balanced and tuned dare I say. The full impact of this incredible ‘attunement’ only hit me with full force a few days after I checked out when I ate some meat and could literally feel myself stumble and, dare I say, fall about a bit.

Detox diets and reduced calorie intake aside what draws a lot of people to St Frances is the opportunity to work with Ms Cowley, the founder and heart of the centre. She is renowned for her healing arts and powerful intuitive process. Part of me expected the work I did with her to be about the tumour and how or why I had manifested it. No such luck. It seems that there was something far more pressing to release and balance.

Looking back now the reason I felt compelled to return to the ‘scene of the crime’, the Eastern Cape, 10km from where I had the first headache was to unearth and reconnect with something I lost a long, long time ago.

Ever since I discovered the simplicity of living 'in the now' in my mid twenties, I’ve been very happy to let past be just that, done and dusted. I’ve also been more than happy to let the future remain a mystery. So much so that I drive Sarah mad sometimes with my resistance to get involved in any kind of long distance future gazing or planning as she likes to call it. I know the communists liked their 5 year plans (as did Hoover in the States) but I have found just the sound of a 5 year plan far too grown up and potentially mind numbing. This is only the tip of the ice-berg. When it comes down to it I’ve resisted having a picture for my life for a long time.
If you want to get my pulse racing and beads of sweat on my upper lip put me in a room with a facilitator and have them write in big letters on a white board “How to Define a Vision for Your Life” or something suchlike. I’ve been there and I’m always left with this overwhelming sense of, “how can I know what I want tomorrow or who I’m going to be or what I’m going to want!”. Invariably, the times I’ve found myself in those situations I become uncharacteristically quiet and un-participatory. The only progress I’ve managed was in a session last year where I realised that having a vision for your life could be as simple as being able to just see what’s going on right here, right now.
Back to the now.
Funny that.

So imagine my surprise when I discover at St Frances, on hot calorie restricted diet, that within me lies a powerful electrifying and exhilarating vision to transform the world around me through film. A vision that I can feel in my body, in my bones and especially on my skin. Hold onto your hats.

Friday, June 26, 2009

School's Out!

25 June 2009

My desk, dark sea to the left of me, sleeping Sarah to the right

Tomorrow is my last day of Radiation and Chemotherapy. I’ve been feeling a rising sense of excitement since Monday. On the one hand I’m expecting all the side effects to get worse and worse and on the other hand I’m too excited to either feel it or notice them.

It also happens to be the end of the school term, school holidays start tomorrow. How perfect. I'm on holiday and so are my kids!

Yesterday as I lay on the treatment bed waiting for the Radiation to start I thought to myself, “I wonder if I’ll ever do this again?” I then decided “no” and savoured every moment of it as if it was my last time ever to get ‘radiated’ . I did the same today and tomorrow I’m going to eat up every second of it.

When I look back at the weeks before I began this treatment I remember how conflicted I was. I had come across the criticisms of Radiation and Chemo and was considering not going through with it. It was a very difficult crossroads for me. I could appreciate and understand why people saw Radiation and Chemotherapy as poison and harmful and not geared in any way towards healing. In fact the one description that resonated with me was the idea that surgery, radiation and chemo did not heal the body from the cancer, it merely treated the tumour. Again the idea that allopathic medicine is myopic in it’s focus on the symptom and not the cause. So what led me to go through with it?

I remember going to the hospital to have my mask fitted a week before the treatment was to commence and meeting the Radiology Team who were going to treat me. They were and are an incredible group of people. All women as it turns out. When we drove away after the mask fitting it was suddenly a non-issue for me. I would do the radiation and chemo. It just felt like the right place to be and it has been.

My dear friend Daron came along one day and shot a whole sequence of photos of the radiation process. You can view them on my flickr photo-stream.


Thursday, June 25, 2009

Betwixt and Between

22 June 09

my desk, still dark outside but I can hear the waves

Last night was the longest night of the year. From today the sun claws it’s way back into the sky. Here begins the last week of my radiation and chemotherapy. Week six of six. I’m feeling a mixed bag today and have for the last week or so. What next?

I’ve noticed in myself that knowing what is going to happen next is more comforting that what that ‘next’ actually is.

My treatment from an oncological point of view has only just begun. After this week’s treatment I have a three week ‘holiday’ to give my body time to recover from the side-effects of the radiation and chemotherapy. After the holiday I am scheduled to start a six month chemotherapy regimen which will be five days of high dose (oral) chemo for one week every week. Sounds do-able.

While everybody has a picture of ‘chemo’ my journey has not been that. I had some nausea in the beginning and days here and there that were tough. But all in all it’s been very do-able. The side effects of the radiation have slowly been accumulating and are now very noticeable both to others and in the way I feel. My hair has begun to fall out and I have a radiation burn on the side of my face, plus my right ear is taking strain. It feels blocked most of the time due to excessive oils which are being generated in reaction to the heat and irritation from the radiation.

I was warned that there could be some ‘short term’ memory loss.

What was I going to say again?

I noticed it at first last weekend at Kath’s wedding. I gave somebody a camera to hang onto for a few minutes while I did something else. When I returned half an hour later I had no idea who I’d given it to. I knew I’d given the camera to somebody but that’s as far as I could go. As much as I searched my records I couldn’t switch on the light, it was like the library was dark and I had no idea where the shelf was. The next morning while I was meditating the lost memory fell out of my head. So it was there all along! Strange, but stranger things have happened.

The biggest side effect of the radiation is that it’s shifted my energy radically. Unless I’m with people I feel very cut-off and dislocated. On the one hand I feel like I should be out there engaging and on the other hand I don’t feel like doing anything. Betwixt and between.

As hard as it was in the beginning to reconcile myself with the radiation and chemotherapy I now find myself at a cross-roads again. Where to from here? The variety of treatments and different paths to healing are still arrayed before me, like a fan of possibilities, radiating outwards.

I’ve booked myself into the St Francis Health Hydro for a week in July to give myself a chance to recover what needs recovering from the radition/chemo and also to get clear on what’s next.

Saturday, May 30, 2009

Ching, Chong, Cha!

Cold beats cancer, cancer beats fear of unknown, fear of unknown beats cold

30 May 2009
The Atlantic to left of me, the 12 Apostles to my right, here I am…

I’ve completed the first two weeks of my six weeks of combined radiation and chemo therapy. If it wasn’t for this hectic sinus cold I’m battling I would say that I feel just fine. Hang on. What I meant to say is that it’s taken a particularly nasty sinus cold for me to get the message.

Everybody around me has been encouraging me and giving me permission to just rest as much as I need to. Have I been listening? No.

I have been going here, there and everywhere. Popping into the office, seeing one or more different kinds of therapists or healers a week, if not a day! Busy, busy, busy like a bee. But I’m not a bee. (Confusing metaphor in South Africa, I know.) Perhaps it’s the fact that I recovered so incredibly well from the surgery and added to that the fact that the Radiation and Chemo treatments I’m on are so very mild. More about that later.

What I have realised in these three days in bed is that the dis-ease I have to heal myself from is not an out-of-control growth in my brain but an out-of-control compulsion to be busy all the time.


Writing that down feels like too much, too soon, too fast.

I could write pages about this. It falls under the heading, why do you think you got this cancer? I have been thinking about that since day one and since day one I’ve known that there was a part of my brain that could get onto an action or thought or plan and ride it so hard and so far and so fast that eventually it sounded like an air-raid siren in my head. So intense and without pause I would become.

To people on the outside this must have looked like many things. Sometimes it would seem like a kind of stubbornness, other times like a great ability to focus. I often experienced it as a way to disconnect from the world and what was going on around me. Excessive focus as a way to avoid life.

Just this week I was writing in my diary and I found myself worrying about arriving at the end of my six weeks of Radiation Therapy and having wasted my time. It was as startling for me to write it down as it was to wonder what it was that I would have wasted. This was before the Sinus Cold hit me so I hadn’t had the time for this to sink in but already I had a sense. This is what I wrote:

Time would be wasted if I emerge on the other end with nothing to show for it.

As I think about this now I’m less interested in the neurotic fear of missing the boat, of not delivering and I’m much more interested in what this incessant drive to be busy, to be doing something about everything all the time, is really about. What am I avoiding in my life by always being busy?

If I let this journey keep me at bay, if I allow my body to rest for the next four weeks perhaps I’ll find out.

When I found out about the tumour some six weeks ago one of my first reactions was excitement. I know this will seem foreign and perhaps even abhorrent to some, but for me the prospect of going on such a huge journey immediately spoke of opportunity to discover new territory, new places, new sensations and ultimately treasure.

So now’s the time to approach the cave one more time. Dragon’s are magical creatures. One moment they are spewing fire and fighting tooth and claw but they can be sly and crafty when they want to be. Suddenly I have to face a Dragon that seems to protect not a shiny golden hoard but a cavernous emptiness. All I can see behind the Dragon is a big dark space in which I have to lose myself if I ‘m going to defeat him.

Navigating the 3 C's: Cancer, Causality & Conspiracy

Monday 18 May
My Desk, the Atlantic on the left of me

Before I’d left the hospital I had first a visit from my neurosurgeon, Dr White, and then a day or two later from my Oncologist, Dr Eedes, to discuss first the histology and then the proposed treatment. The histology showed what Dr White had expected, a malignant tumour which, due to it’s position, he was able to remove in it’s entirety. However the tumour was like a beehive, he explained. You can see the beehive and remove it, but you don’t know how many bees are outside of the hive at any given time. These ‘bees’ of course being other cancerous cells in the surrounding tissues which are doing the cancer thing, namely reproducing, making more cancer cells. So the focus Dr White explained was to kill any remaining cancer cells. Enter Dr Eedes.

Dr Eedes, one of the most highly regarded Oncologists in the Western Cape, explained that for this particular type of brain cancer there was a ‘best practice’ used worldwide which involved six weeks of radiation combined with an oral chemo drug. He explained and I’ve also found out since that this particular form of chemo is on the milder side of possible chemo treatments, being oral and in slightly lighter doses than what other types of cancer often warrant.

So that was that sorted then?

It took me almost a week at home before I dared to go online in search of ‘more info’. There was a part of me that didn’t want to get too familiar with how the doctors saw me or my condition. I can appreciate how useful the labels are for them in helping them navigate what must be a very difficult landscape. I say ‘difficult’ because I did start to research and find out more about cancer in general and brain cancer in particular. The more I read I started to wonder how a person who becomes an Oncologist to ‘heal’ people with cancer must function with such a limited tool set (Radiation & Chemo) which has a very chequered history and jury’s still out on whether they actual heal.

Why was I so reluctant to engage with the clinical in’s and out’s of my condition? On the one hand I was weary and cautious not to be drawn into a set of labels that were just that, useful to describe something, but not the thing itself. On the other hand I really did not want to hear what the statistics were on my kind of cancer and the survival rates. Would you? But like all things you resist, viola! A friend with the best intentions sends me a link to a site that he thinks has useful info and within seconds of landing there I see a graph with survival rates for people with my kind of brain cancer. Reminds me of a Jedi mind trick: “What I don’t want you to think about is a jedi knight wearing a tutu”. Too late, right. So what did that change, if anything?

I now had a sense of why some people were so alarmed at my news. When I checked in with myself I also realised that these graphs were only one side of a much bigger story and so I started to read and research. Little did I know that I was about to uncover one of the biggest unanswered questions of our modern age.

The easy questions seem to be, in no particular order:
  • When will the aliens give us 3D TV technology?
  • Is there a God?
  • Who shot JFK?
Much harder I discovered was:
  • What causes cancer?
One of the first distinctions I discovered was that the combination of Surgery, radiation and chemo therapy does not technically heal the body of cancer as much as it removes the manifestation of cancer, namely the tumour. To heal the body of cancer something else often needs to happen, something that addresses the underlying cause, what gave rise to the cancer in the first place. But nobody can agree on what causes cancer! So where does that leave us, where does that leave me?

After all the reading it left me feeling between a rock and a very hard place. On the one hand I had great doctors prescribing six weeks of radiation and chemo therapy and on the other I had an avalanche of “alternative therapies” all vying for pole position. Not only did the alternative therapies demand their moment in the sun, their advocates also spent a huge amount of energy painting the “Big 3” (Surgery, Radiation & Chemo) as an evil triumvirate cooked up by a cabal comprised of the American Food and Drug Administration (FDA) and “Big Pharma”, intent on keeping their monopoly on ‘approved’ cancer treatments that they can profit on and squashing any treatment that they couldn’t own even if it did show promise or even heal people.

So how did I navigate this?

Intellectually I couldn’t resolve this. It was a minefield with both sides taking great pains to paint the other side negatively. What really set my alarm bells ringing was noticing how much energy going into making it a black and white issue. So I took the 3rd way. I felt my way through it is what I did.

I remember going to the Vincent Pallotti Oncology ward to have my mask made a week before my therapy started. I met the team that would treat me for the six weeks in the Radiography department as well as the team that would handle the chemotherapy. These are some of the best people I’ve met in a long time. I came away from that day feeling that I could go far with these people. I could feel that they cared and that they were committed to me healing. That decided it for me. I exhaled and knew that no ill could befall me in that place.

Ironically the harder part of the journey now is to navigate the myriad of alternative therapies. It seems there are enough alternative therapies to suit every kind of personality, eye colour and taste.

Monday, May 18, 2009

The Missing Piece

Sunday 17 May 2009
My Desk, listening to the sounds of the Atlantic

I arrived home exactly one week after having the tumour removed by miraculous brain surgery. It was a strange new reality that met me around every corner. I was and still am overwhelmed by an overwhelming feeling of feeling.

I can’t make sense of it, don’t want to make sense of it. It’s enough to just wake up in the morning and instead of thinking, ‘what will I do with this day, how will I take it and shape it and make it interesting to me and do something with it?’ I don’t. Most mornings I wake up and I notice a feeling or sensation in my body. Usually it’s in the middle of my chest and it sets the tone for what unfolds. But more than framing the day, this feeling has become the new language of my waking time in ways that I can’t really express in words.

I have wondered if, by divine intervention, the neurosurgeon removed that part of my brain which has been holding the reigns of my waking hours for the last 38 years with such cunning control allowing me only rare glimpses of what it might be like to feel.

So on the one hand I have been swimming in an ocean of feeling and discovering a patience and receptivity that has me speechless, (hence the lack of blogging!). But on the other hand I have been watching the approaching deadline of my Radiation and Chemo therapy approaching which has been pulling me out of the ocean like a coast-guard helicopter intent on rescuing me when all I want is to carry on swimming in the warm water.

Which brings me to tonight. Tomorrow morning I begin Radiation and Chemo Therapy. It will work something like this: I will receive about 10min of very focused X-rays to an area of my brain designed to target any remaining cancerous cells that lay outside of the tumour that was removed. I’ll be going to Vincent Pallotti hospital every weekday for the duration of the 6 weeks. The Chemo Therapy will be a pill or pills that I’ll swallow every day for the next 6 weeks. That will be followed by a 3 week holiday and then an MRI scan to see how I've responded. I'll then start a 6 month Chemo treatment which will involve 5 days of a higher dose Chemo per month for the 6 months and then another scan and so on.

How do I feel? On Friday I noticed that I'd been picked up by the coast guard. I felt a real discomfort and sense that I did not want to be where I was for the first time since the wave broke. On Saturday the feeling intensified and I acknowledged that perhaps it was time to admit that the prospect of Radiation and Chemo was enough to make anybody feel a bit bang. And now as I sit here, on the eve of the next big phase of this journey, I feel ready. If I wanted a walk in the park I'd be in the park.

What about the Alternative Therapies? It’s been a bit of climb to get to this point. More about that tomorrow.

Sunday, May 17, 2009

How do I know which part of my brain is missing?

I got a little behind, so here's some 'back-story'

Thursday 30 April 2009
Room F5 Cape Medi Clinic

From here I can see all the way down to the see and beyond.

A thought just occurred to me… How would I ever know that the Neurosurgeon did not remove an essential part of my brain? How would I know? What if the piece that I would miss, by virtue of being missing, will never make it’s absence felt by just not being around?

I had some visitors today and I wondered if they were being briefed down the corridor on the part of my brain that was missing so that they didn’t accidentally mentioned or alert me to it.

Funny. Funny in a brain surgery joking kind of way.

The bottom line according to my Neurosurgeon is that the part of my brain that I grew the tumour in, the front right temporal lobe, is one of the least critical parts of the brain and conversely the most ‘up for it’ when it comes to taking bits out.
Or put another way, he has removed up to 9cm of this part of the brain with no notable side effects. This is one of the many miracles of what is happening to me. I grow a tumour in the part of my brain where there is little if anything preventing a surgeon from removing it in it’s entirety.

But I’m writing this myself and I’m also the one with 5cm less front right temporal brain so who are you going to believe?

I mean I know there’s a hole there now!

Tomorrow is a week since the operation and I’m probably going to be discharged, I’m going home. Today is the first day since the operation that I feel like I can survive myself. If I woke up tomorrow and the Swine Flu had killed all the ugly people in the world and Cape Town was overrun by six foot blonde’s ripping all the copper out of the city to redo their bathrooms I think I’d actually be able to fight my way to the harbour and find a way out of here.

Wednesday, April 22, 2009

What the Doctor thinks he saw

Sunday 19 April 2009
My side of the bed, home

When I woke up on Saturday morning I felt better than I’d felt in a long time. Was it the reduced swelling from the mega-dose of steroids I was on? Was it the night’s sleep bereft of rolling a large boulder up a hill and then watching it tumble down the other side? The only thing I remember out of an otherwise flatline of a sleep was hearing my son, Jude, crying in the middle of the night, hearing him get up and then knowing that he was ok.

Dr White arrived mid morning and began to doctor me. There was something re-assuring about the way he tested my reflexes, checked my eyes tracking his finger, my pupils dilate and various other oddities of the neurosciences. Then he began with the neuroscience lesson.

From the MRI and the previous CAT scan and his experience he felt that it was more than likely an “Astrocytoma”, one of the more aggressive variants of brain tumour.

What's obvious is that there is some bleeding (the white area) around a darker area of growth.
The most active cells in our brains are called glial cells and they do most of the repair work and maintenance. It follows that if there was going to be any 'bad' mutation that it would more than likely happen in and amongst these glial cells which are constantly reproducing themselves in the process of building the various bits of neuron sheathing, brain scaffolding and whatnot that they do.

Dr White offered that given the size of the growth he could see on the scans and the way the symptoms were manifesting (headache’s and ‘seizures’) he thought that it was an “aggressive” Astrocytoma. Cancerous growth are apparently ranked from grade 1 to grade 4 depending on how active and virulent they appear and behave. He went on to say that until they can do a biopsy on the tumour this is all speculation but that he was proceeding on this basis.
He went on to explain what was going to happen to me in these rough stages:

On Friday 24 April he plans to operate on my brain, removing this growth and putting my head back together. I will go into an Intensive Care Unit (ICU) for a day or two, or until the risk of any bleeding, swelling or infection was ruled out. From there to a general ward at the Cape Medi-Clinic and then home by the following Friday.

Once the scientist dudes had sliced and diced my dragon they will know what to call it on their carefully devised maps of the human brain and then we’ll all get together and talk about what their map suggests is the next step to take. Dr White has told me that if it turns out to be an Astrocytoma then it will more than likely involve 6 weeks of Radiotherapy and a milder form of Chemotherapy.

We’ll cross those bridges when we get there.

Tuesday, April 21, 2009

What The Doctor Saw

Sunday 19 April 2009
My side of the bed, home

“The castles the mind builds by day
the heart can tear asunder
in a slumber”
Stupor Mundi

So much has happened since Thursday that I find it difficult to pick up the narrative thread of what happened next and what feeling or thought that evoked.

When Sarah and I were alone that Thursday evening I felt, dare I say, excited. There was no part of me that thought that this would end in tears. I remember saying something to her like, “this feels like the first time I went overseas.” And it really has. I remember sitting on the plane, flying to America, exhilarated to be sailing into the unknown, hungry for what was going to happen next.

There has always been that part of me that, like a Meerkat, sticks its head out of the borough at the first sign of anything vaguely interesting and out of the ordinary, even if it is burrowing inside my head.

Thursday night I slept, if that’s what you can call it. It woke up exhausted. It felt like I had spent the whole night pouring the left part of my brain into the right and back again. Sissyphus eat your heart out!

Friday was a busy day, full of distractions, things to do, people to meet, places to go. Thank goodness. Dr White had me check myself into the Cape Medi Clinic where I met him later that morning. He was in theatre all day and popped up to see me on one of his tea breaks, between brain operations. The moment he walked in the door I felt good about what was happening. I told him the story, pretty much like I have here and he had already seen my CAT scan. He asked me if I had been experiencing any ‘other symptoms’. Always one for over-sharing I let him in on what to date has been a very personal journey and for me in no way connected with what was going on… or so I thought.

About 5 weeks ago I was sitting in my office listening to a colleague when I suddenly become hyper aware of everything happening around me. I could hear Theo talking to me. I was thinking about what he was saying and it seemed at the same time I was also aware of everything else that was going on in the street outside, the room next door, and dare I say somewhere else that I knew wasn’t as easily placed and explained as the room next door.

The feeling passed. Then it happened again and again. Except each time it happened it become more layered and nuanced. It felt like something or some other time and place was bleeding through into my waking awareness. At times it felt like a memory. At other times it felt like it was happening to me right then and there. Each time it was an aspect of the same thing. There were actually people in this other time/place I kept bumping up against but I could never see a face or recognise anybody.

The first time I described it to Sarah I remember saying to her that I feel like a new sense has switched on inside of me. I felt like I was experiencing all this extra stuff on another level in addition to the five senses we make do with every day. If I had to locate the sensory organ for this new sense I would say it was inside my solar plexus.

It was at this point that Dr White, my neurosurgeon, piped up and said, “oh that must have been the beginning of your seizures.” What could I say. At that point it dawned on me how limiting the maps are that we have drawn up to describe the territory we find ourselves in. The doctor’s map tells him I’m having a seizure. My map tells me I’m experiencing a world beyond my borders.

Of course there was nothing else to say to Dr White at that time. Probably because he sent me to the City Park Hospital (Christian Barnard Medical Centre) where I had an MRI scan. If you’ve ever had one you will know that it is a very foreign place to be, lying inside a narrow sarcophagus that huffs and puffs with a myriad of magnetic pulses and impulses. A friend wrote to me today about her experience of hearing ‘God’ talking to her during her MRI scan and I knew exactly what she meant.

En-route back to the Cape Medi-Clinic I had another one of my experiences/seizures and was very relieved to be back in the hospital. I was attached to a drip and put onto an anti-seizure medication Epilim and a saline solution to hydrate me. I’m going to get off this Epilim as soon as I can. It’s scary stuff. I totally realise why I’m on it and while Dr White is running the show I’m going to allow him to make this call. But as soon as I’m out of surgery I want off this stuff. Nuff said.

The MRI Scans were sent to Dr White who was still in theatre and he appeared later in the afternoon to tell me what his prognosis was. At this point he hadn’t had the time to inspect me and he made an appointment to meet me the next morning and do a full consultation with the MRI scans and give me the full run-down on what he saw and what that meant. At this point he assured me that if it had been urgent I’d already have been in surgery. This is what his first prognosis sounded like:

I had an ‘aggressive’ tumor behind my right eye which had to be surgically removed as soon as possible. He told me he wanted to operate on Friday after the election craziness had subsided and when he had his trusted theatre team with him. He prescribed a substantial course of steroids containing cortisone to combat the swelling to reduce the pressure of the growth on my brain. He made an appointment to see me for a full consultation on Saturday morning to take inspect me and discuss all his findings and answer all my questions.

I went to sleep on Friday night drugged up to the eyeballs, enough steroids to give the ‘governator’ a run for his money and talk of brain surgery that still left me feeling excited and a more than a little intrigued by what this all held in store.

Sunday, April 19, 2009

The Story So Far (OR Why does everything big always involve sex)

Saturday 18 April 2009
Cape Town Medi Clinic
Bed F21 with a courtyard view

I’ve never suffered from headache’s. The rare moments where I have had headaches I’ve rarely taken any kind of medication. The only painful head pain I’ve ever experienced was during and following several dental operations to remove excess teeth during puberty, wisdom’s et al. This was technically not head pain, but in my jaw. But like anybody who’s been ‘hurt’ by a dentist, it feels all the more intense because it’s so close to your brain.

I can remember wondering if an amputated toe could possibly hurt as much. If somehow the nerve impulses could somehow loose some of their urgency if they travelled over a greater distance. Anyway, the question was there and obviously not important enough to ever answer because I didn’t go on to study medicine and neurology, instead I chose to become a student and practitioner of a different kind of signalling science, choosing to explore and learn how to send signals through the ether, through the air, using the power of light to flicker and touch a different set of nerves, to trigger a different set of impulses, some painful, some not, some exhilarating, some edifying.

And so to last week. I was making love to Sarah when I started to feel a tension, a fiery burn up the right side of my neck. Perhaps if I was watching TV at the time I would have paused sooner. As it was I was consumed and otherwise occupied. I only realised what was happening when the pain exploded like petrol thrown onto a flickering fire. Suddenly this white-hot hand seemed to reach up out of my neck, gripping the right side of my head, squeezing my ear, my eye. It was like the worst kind of sinus pain I’d ever experienced and more. I fell down on the bed and all I could do was dive down into something like sleep where I felt I could escape the worst of it.
Sarah fearing the worst kept waking me up every hour to check on me and in this way we made it through the night (thanks Louis Ferdinand Celine). The next day I spoke to my two doctor friends, one who happenes to be ‘my’ doctor and between them we established that a sudden painful headache without any other symptoms may not be a ‘worst case’ scenario and I promised to report any other changes in my condition.

For the remainder of last week and this week I had a mild headache that half wasn’t there. If pressed I would admit that it was hanging around the right hand side of my head. After a lifetime of no real headache’s I was beginning to wonder what this was about. Then on Wednesday everything shifted.

At lunch I had an experience that I later described as a ‘blood sugar’ moment. I suddenly felt like I might feint and asked Sam to get me something with sugar while I slid off the chair (in the middle of Melissa’s in Constania nogal) and lay on the slate floor wondering what was going to happen next. The juice arrived and five minutes later I felt that I wasn’t going to feint after all, climbed back on my chair, seemingly normal.

If you keep reading you will soon begin to regard this word “normal” with some suspicion. I suspect you may come to realise, if you haven’t already, that normal has got very little to do with anything interesting and life-affirming.

Back at my office later that day I was seeing a client out and when I got back to my office I had another one of these ‘blood sugar’ moments only this time it was much scarier. I had visions of passing out and nobody being able to get to me so I leopard crawled to my office door which latches from the inside and made sure the latch was off. Then a scrambled for my cell phone and called Murray, my doctor, and with some urgency asked him to get to me as quick as he could. Like the angel he is he sprung into action.

When I began to feel like everything was going to be ‘normal’ I felt a bit foolish that I’d summoned Murray who was by this time weaving his way through rush-hour traffic to rescue me from who knows what. When the second biggest headache of my life hit me a few minutes later I got back on the phone to Murray pronto. He had only one thing to say, “I’ll be there now and I’ll bring some shots”. It was then that I knew he was an angel.

Everything happened simultaneously after that. Murray arrived, Sarah arrived, Sarah’s sister Liz arrived and Murray gave me the biggest Voltarin injection straight into my ass cheek. At first I thought the pain in my ass cheek was an attempt by Murray to distract me from the red hot pokers drilling through my eye and ear sockets. But when the I got home a few minutes later and the ‘migraine’ had receded into a more manageable painful headache I was so grateful.

I have to acknowledge that up to and until this painful Wednesday I had been more than a little laze’s faire about the whole sudden headache episode of the previous week. If Sarah had had her way we would have zipped off to Port Elizabeth for a CAT scan the day after the “First Headache”. I balked at what I thought was a complete over-reaction. I thought that if it was serious that I would have other symptoms. And in the absence of ‘other symptoms’ I felt it more than appropriate to just take it easy. As will be revealed later, I had in fact been having ‘other symptoms’ for about four weeks before the “First Headache”, but more about that later.

When I woke on Thursday morning with a nagging headache on the right side of my head I acknowledged that Wednesday qualified as ‘further developments’ and that I was now ready to be tested. I saw Murray for quick physical and then we headed over to the Christian Barnard Medi-Clinic in Cape Town city centre for a CAT Scan.

The radiologist who inspected my scan was surprised at me sitting down next to him as he viewed the plates and a bit put-out I’ll add. I realised very quickly why when I saw a very visible bit of something pushing my brain this way and that in the middle of my head. Not be drawn out at all he mentioned something about a ‘lesion’ and bleeding and that he would give Murray the run-down.

If you like me haven’t been hanging out in hospitals then you will also be wondering what on earth a ‘lesion’ might be. As it turns out it's not 100 well drilled Roman soldiers. It turns out that it’s doctor speak for a tumor or growth. But not necessarily in that order.

This was the first moment that the word ‘Tumor’ had popped into my head and no sooner had it landed I promptly put it down again. It has a real hot-potato like quality. It actually radiates a tangible energy. I imagine in the cold war days if you lived in the west and thought McCarthy was the best thing since automatic dishwashers then the word ‘Communist’ may have had a similar radioactive quality to it.

Murray booked me to see a highly regarded Neurosurgeon, Dr Grant White, and the plan was to see him with the CAT scan on Thursday and let him guide us from there. From ship to shore, from pilot to guide.