June 2017 Operation and Stereotactic Radiosurgery

 To my great relief, I was told that I could have radiation after all. A Canadian colleague told my oncologist that a patient could have a 2nd dose of radiation provided that at least two years had passed since the last radiation. 

In the matter of a few months I went from fairly normal to a dizzy, whispering, gasping, vomiting, shadow of myself. I saw a speech therapist to improve my breathing, rein in the coughing and to make the most of my speaking ability. (The speech therapist addresses breathing, swallowing and speech - in that order of importance. I discovered that the coughing was due to not getting enough air in!)

My last MRI (the date brought vastly forward) showed that the tumour had "bloomed" and had impinged on the cerebellum (hence the dizziness and vomiting) and was now quite large, besides crawling onto the tentorium (membrane separating the cerebellum from the cerebral hemispheres). Time to operate.

I was used to the idea now of awake surgery (not that one has any recollection of events. Apparently, the amnesia-inducing medication blocks the laying down of any memories) and had great confidence in my neurosurgeons - the same surgeons who had operated on me in 2010. Even so, the anaesthetist told me afterwards that I had been an unusually excellent patient during the awake surgery, where one is constantly monitored by a nerve monitoring machine. My surgeons had an upgraded machine that was better able to protect the brain stem than that used in 2010. (In 2010, I was fortunate to be the first or so patient in South Africa to be operated on with the help of nerve monitoring to protect my cranial nerves).

After the surgery I could not swallow at all for a few days, and then only specially thickened liquids. I also discovered that I had permanent double vision when looking to the right. Otherwise, my recovery from surgery was faster and better than after the first surgery in 2010. No doubt, this was due to the superior nerve monitoring.

My surgeons managed to preserve all of my cranial nerves. Originally, when deciding to put off surgery, the idea was that the tumour might stop growing - meningiomas often do that - so that the surgeons need not operate, or it was hoped that if the tumour grew slowly, it would strangle my right-side lower cranial nerves equally slowly. A slow decline in nerve function can be adjusted to and is not a sudden shock to the body. In short, the surgeons were hoping for time to allow 80% of nerve function to be gradually lost before the nerves were cut.

In the event, the tumour grew too rapidly for that, and my neurosurgeons found that there was still significant cranial nerve activity - and so they decided to go for good quality of life instead. (They could not entirely eradicate the meningioma thanks to its awkward point of origin in the jugular bulb or foramen). 

So, for a second time, all of my cranial nerves were (unexpectedly) preserved.

However, histology on the excised tissue showed that the meningioma had moved up a grade (also a rare occurrence. 95% of meningiomas remain benign - stage 1). So, as soon as possible (a month after surgery, in practice) I was fitted with a new mask and stereotactic radiotherapy was planned. This time I was given a total of 50 Grey (enough to kill you) in 30 divided doses.

In that 6 weeks of radiotherapy, I felt progressively more and more tired and ill. I mostly rested in bed and still lost weight. Going for treatment felt like a vast chore. Getting dressed and walking down the corridor to the cancer treatment unit once we arrived at the hospital seemed a huge effort. Fortunately, my husband drove the car there and back. I travelled with a basin since I continued to vomit without notice, and carried a closable cup since I salivated continually and profusely (bulbar palsy due to temporary damage to the lower cranial nerves).

During that time though, I managed to write a story and did some Japanese ink paintings (sumi-e) besides reading a number of books and editing friends' stories and one friend's scientific paper. I also had a number of visits from dear friends. I was touched that they had made me things (I always appreciate it when people take thought, time and effort to make things for me) or brought me treats that I could actually eat.

I remember eating with great delight what we called Corn Curls - puffed maize snacks about 1x6 cm. Real junk food. Mostly air, colouring and salty flavouring, but with a very satisfying crunch after so many months of semi-liquid food (at my worst, I could swallow nothing with the slightest texture. Everything was seived to make sure). I ate each corn curl in 4 or 5 tiny bites and let the nibbled snack melt in my mouth before trying to swallow it. But the crunch as I bit into each curl was worth it! I went through bags of them!

When at last I was well enough to go to the cinema, I recall eating pop corn - always a cinema favourite - by means of sucking on a piece of popcorn until the white bit dissolved and spitting out the hard kernel (I carried my spit cup everywhere since I continued to salivate excessively for many months). Where there is a will, there is a way!

Despite the negatives of tiredness, weakness and nausea (I was given steroids and anti-sickness medication to help with the effects of radiation), radiotherapy is truly miraculous - we live in an era where the elemental forces of the universe are used to treat the body, being finely focused so that only one little area is killed and not the entire person. I was very grateful to be offered radiation again - and that my life was preserved once again, thanks to my wonderful neurosurgeons, my oncologist, and their teams.

Back to 2017 Briefly.

 In 2016 I began having symptoms again, after the previous tumour outgrowth seemed to have regressed completely, after radiosurgery follow-ups to brain surgery (see earlier entries). General rejoicing and MRI checkups downgraded to once a year again. 

But then...

July 2016, my right arm felt heavy when I lifted it to the side, and shortly thereafter I couldn't lift my arm to the side at all. Then I noticed that my right sternocleidomastoid muscle (the visible muscle down each side of the neck) had disappeared. I knew enough by now to realise that this - and the lack of arm lifting - meant that the accessory nerve was compromised, which meant that the tumour was growing again and far sooner than we expected.

This was followed in quick succession by partial loss of my voice, together with bouts of coughing and a tightness of the throat. An ENT checkup confirmed that my right vocal cord was paralysed (though, luckily, the gag reflex was intact) and a hastily called for MRI scan confirmed that the meningioma was indeed growing again. My surgeon said we would go back to active biennial MRI scanning, as the tumour was not yet large enough to warrant an operation.

Though I said nothing at the time, I was quite depressed, since I knew from what I'd been told by my oncolgist that radiation was not an option any more - and if the tumour grew at this rate, how may more operations could I reasonably have before the tumour became inoperable? So, this time was very dark.

In rapid succession, I lost my voice, my balance (I became dizzy if I changed direction quickly or tried to go up or down a few stairs), and my ability to eat solids. I also began to vomit suddenly and nearly daily. It was most disheartening to take nearly 15 minutes to eat a soft-boiled egg, only to vomit it up again! I also got muscular spasms on the right side of my tongue (termed fasciculations - it looked as though worms were wriggling inside my tongue and felt like tiny electric shocks). All this besides the by now familiar headaches and stabbing pains in my right ear. I learned that meningiomas tend to grow in different directions each time. Hence the different symptoms this time. I also (as in 2010) lost weight precipitously. In part this was due to poor eating capacity and vomiting, but the weight loss was in part due to cachexia - where the body wastes away. This is common for cancerous growths but it can cause death in itself when the weight loss becomes uncontrollable. So I was doubly worried. 

Brief Break in the Medical Litany: What else have I done since 2013?

 Familywise, our eldest son (a mechanical engineer) got engaged and then married, later moving to the UK and having their first child - a boy. Our second son graduated from Stellenbosch University as a mechatronic engineer and also moved to London. Our daughter graduated with a BA from the University of Cape Town, after a gap year spent as a teacher's assistant at a private junior school in the UK and a junior executive in an advertising firm in London. She has had therapy - cognitive behavioural therapy - for ptsd after her burns (see earlier entries), and is soon joining us all in the UK.

Despite the bouts with the meningioma and moving to the UK, I have managed to do some writing - all of which has given me much pleasure. 

I have written several short stories, one of which was entered into a South African fantasy and science fiction magazine (Nova) competition, where it was a runner-up. Sadly, the judge did not realise that the story was meant to be a coda to the Count Dracula story and so she criticised me for lack of originality in name choice. Oh well. I enjoyed writing the stories anyway.

I wrote a story per day, which was very satisfying as I never knew - starting out - what the story would be about.

I also wrote a series of fairytale retellings, in which I related the stories with appropriate emotional input (fairy tales tend to relate dreadful doings in a matter of fact way) but with the characters accepting the norms of the fairy tale world as simply everyday facts. I chose to tell the stories of Bluebeard, Catskin, Patient Griselda, The Blue Light (precursor to The Magic Tinder Box), The Frog Prince, The Juniper Tree, The King of Lakeland's Three Daughters, and King Thrushbeard. I adapted the stories where necessary but used the oldest versions of each (thus, for example, the maiden has to chop off the frog's head rather than kiss him. The latter version was a mawkish Victorian tale). I added to this collection over time, but was especially proud of my version of The Juniper Tree, which I wrote in one day while still sick and exhausted in bed during my radiotherapy in 2017. 

I wrote one short story while in hospital in 2021, but no more. Part of the problem is that thanks to my shaky right hand, I now type only with my left hand, which slows everything down. A stroke rehab ward is also rather busy and not conducive to creative writing.

Over the next month or so, I intend finishing my retelling of the ballad of Tam Lyn. I made many notes in past years which will be of help. There have been a few prose versions of the story, as it is seen as a popular "girl rescues boy" story for modern girls, but the original story is far darker - as would be deduced from the older meanings of the words and phrases of the ballad. I think that although it was recorded in written form in the 1700s the ballad dates from 1100 if the wording is anything to go by. Accordingly, my version is medieval in its setting.

Other half-finished writing projects are retellings of the Trojan War, the theogony of the early Greek gods, and a "me too" story of women betraying each other by mate poaching. I have had several false starts though, since I prefer mythological and legendary tales. I thought that the Harpies (as originally envisaged) would be suitable subjects. Incidentally, the story of Pandora has been sadly distorted by a scurrilous retelling by Hesiod, who was clearly a misogynist. I will address the true Pandora story in my other blog, Umkhomo.

Why I now wear an eye patch.

 Another effect of surgery was to give me permanent double vision. During the 2017 operation I got permanent double vision in the right upper quadrant, but this was no hindrance to normal life (apart from contributing to my inability to drive again). I simply avoided looking to the right. 

Now, however, the double vision was everywhere. The simplest expedient was to keep one eye closed all the time. Since my right eye was compromised anyway, thanks to the facial palsy on the right so that the eyelid didn't blink and lubricate the eye, it was sensible to wear an eye patch over the right eye (I keep the eyeball lubricated with a sterile ointment, applied a few times a day, and the eyelid is taped closed every night. After some experimentation, I found a patch that holds the eye closed, which is relaxing and helps keep the eye lubricated longer.

For some months during my hospital stay ( of seven months) I had to be treated for an erosion of my cornea due to dryness. I worked out that this probably occurred when I had to be operated on again for hydrocephalus and spent a week in ICU where I don't recall any lubrication or taping of my eye. So now we are very careful about my eye care.

I've become used to wearing a patch and I like to think that it looks rakish, and as though I have just come from a Tarantino movie. It's certainly become part of my everyday life.

Balance

We have three modes of balance. Usually, they work together to ensure we know where we are in space and which way is up. They also work together to keep us from toppling over.

I'm talking about the vestibular apparatus and semicircular canals of the ear, the cerebellar lobes, and general proprioception of the body. In my 3rd brain op (in June 2021. I will get round to writing about the 2nd op, which took place in June 2017), the balance organ on the right was destroyed by the tumour and the relevant cranial nerve had to be severed. Not usually a problem (apart from becoming deaf in that ear) but the tumour had become entangled with a lobe of the cerebellum as well and that was necessarily damaged in surgery (there was already damage from 2017, of which more anon). This left me only my untrained stand-alone proprioception to depend on.

At first, I simply fell over even when sitting. My head lolled to one side without me even being aware of it. With practice though, I can sit straight without toppling (unless I lean too far to the right) and after the first couple of weeks I could hold my head straight. It took longer to learn to stand unaided. At first I simply fell helplessly over - thank goodness for the constantly vigilant physiotherapists by my side! A year later, I can stand alone for up to 30 minutes, though I always have something to hold onto if I need it and the bed to fall onto if I should fall. At first I stood like a baby with feet well apart. Now I can stand with feet almost together and I can sway without falling over. Indeed, swaying and turning my head has been part of my balance practice.

All is not perfect. My movements are somewhat jerky as I move my body, but the swaying is smooth and being able to stand and look out of a window like a normal person is deeply pleasurable and satisfying - things we usually take for granted.

An odd and thankfully temporary effect of the loss of my right side balance was the most alarming feeling that would happen without warning - usually when I woke. The entire ward seemed to have tilted 90 degrees. I would cling desperately to my bed rails, convinced that if I did not (although I was lying flat on my back) I would slide off the bed, which seemed to be vertically on its side. The nurses moved disconcertingly along the "walls", the ceiling formed the wall and the windows (we were on the 2nd floor) formed the floor to my world. I felt like I was in The Exorcist. One of the nurses, seeing my terror when it first happened and hearing my description, evidently thought I was possessed (I later worked out) and she conducted an impromptu exorcism. Quite a surprise, but the nurses were very sweet and truly wanted to help their patients.

This sideways tilting eventually came to an end when I realized that the world was not really tilting and I began investigating the phenomenon. After my 2017 op I had been left with double vision when I looked to my right and upwards to the right. Over time, I naturally came to avoid that region of vision. Curious what it would look like in that area, I looked up and rightwards. Instantly the world righted itself and I no longer felt myself falling. For the next days all I had to do was to look up to my right to stop the 90 degree tilt immediately. After a few days my inner ear started behaving - or rather, my remaining inner ear took over how I experienced the world.

On top of having a stroke ...

 Part of my 3rd surgery involved having to sever the lower cranial nerves on the right, since the tumour had all but strangled them anyway. Thus, I fully expected to lose my hearing on the right (all but deaf on that side anyway, thanks to the tumour and past radiotherapy) and my ability to talk and swallow.

As expected, I lost my hearing on the right (ear phones last twice as long when you only need to use one!). An odd side effect - which took me a while to work out - is that sound appears to come from the opposite direction to where it really comes from. It is better now, but I still occasionally hear things from the wrong direction.

I was pleasantly surprised to still be able to talk, though my voice is now very basic. Most of the intonation has gone. I used to have a cultured and musical voice. I have learned through therapy to talk more slowly and to use my diaphragm in order to avoid running out of breath and wheezing during speech. Even so, I can manage only a few syllables at a time and my speech is very quiet.

My husband is very resourceful and has given me an electronic doorbell to call him with. I can carry the doorbell gadget around with me.

My speech is complicated by three things - the severing of the nerve to the right side of my tongue (I like to think I have a charming lisp), my right-sided facial paralysis (which should be improved by light surgery at the East Grinstead Facial Palsy clinic) - leading me to speak only from the left side of my mouth, and trismus or lockjaw of unknown origin, but probably happening as a result of my surgery. For the last year, despite my use of a jaw-stretching apparatus (Therabite), I have been unable to open my mouth more than a couple of centmetres at most. Sometimes less.

I discovered that I have an oddly twisted larynx. It probably developed that way when my right vocal cord first became paralysed in 2016. It may be why I can still talk at all - so I am not complaining!

Other challenges result from my inability to swallow - the subject of another entry.

Brain Stem Stroke

 It was quite a surprise to wake up after surgery to discover that I'd had a brain stem stroke after all. It came about while the surgeons teased tumour tissue off the brain stem. The first I was aware of was the physiotherapists checking my relative sensation and movement in my left and right sides.

So I have ataxia on the right - a shaky right arm (unless I keep my hand at rest against something to steady it) and (at first) uncontrollable movement of my right leg. With lots of physiotherapy that has improved.

My left side is odd in that I have reduced sensation on the left - from the midline. I have reduced ability to feel hot and cold and pain on the left. I discovered early on that I must test water temperature with my right hand or everything feels lukewarm, even if I am being scalded! Showers are an odd experience - I love feeling the hot water cascading over me. Now, only the right side gets the hot water. The left side only ever experiences lukewarm water. 

I also have almost numb spots on the left, especially on the sole of my foot. Sort of like when the foot has gone to sleep.

The pain insensitivity has come in handy. I used to think that the nurses were very good at taking blood or giving injections painlessly, until I realised that there was a general pain insensitivity on the left. After that realisation, I would ask for needles to be given on the left. Many nurses thought I was a real stoic! As I was in hospital for seven months and had daily anti-coagulant injections to my abdomen (hospital policy) that added up to lots of injections, cannula insertions and blood drawings.

Alas, my ability to walk unaided has never returned (it is a year since the operation) and I don't expect it will now. As well as everything else, my core is weak and I need constant exercises to strengthen it. My left leg also shakes when I walk - no one is sure why, probably weak muscles. The right foot either drags or the entire leg moves like that of a marionette in the hands of an inept puppeteer. I walk holding on to a 4-wheel walker, but cannot walk far. 

Walking is complicated by a lack of balance - probably the subject of its own entry. The net effect though is to feel continually unsteady as I move. It's sort of like being drunk without the alcohol!

So, I mostly get around by wheelchair or stay in bed.

So this is me...

 This is me after my 3rd brain surgery to remove the meningioma which had grown yet again, and far sooner than expected.

I was warned going in that I could have a brain stem stroke - or even die during surgery. But I was in such dire and almost constant pain that the risk was worth it. As it happened, when the team looked at what was there, they realised how close I was to death. Without the operation I had a couple of months left at most.

The op was 15 hours and required 2 surgical teams - one for the ear and neck, the other for the skull base. It was the 1st time that this kind of op had been done in its entirety. My excellent South African skull-base neurosurgeons looked very grave and did not want to take on the surgery. I think they were thinking palliative care only.

So hats off to the UK team at St. George's Hospital.

By the time of my op I was hardly sleeping. Pressure and pain would build up in my head every time I sat or lay down more than 30 to 60 minutes. I would also get spasms in my right leg. All this was relieved only by my walking or standing for up to an hour. Pain killers did nothing. My nights were a long round of poor sleep and walking off the pain. 

The good part of it was that to distract myself from the pain (when it wasn't too bad) I did a lot of crosswords, sudoku, word puzzles and colouring in. So at least I spent my time usefully.

My days were spent in trying to catch up on sleep...

Over the last few months before the op, I lost weight precipitously. I knew from past experience that I would lose a lot of weight very suddenly when the tumour started growing, so I tried to put on a bit extra - quite an effort, given my eating problems - of which more later. In a matter of months I lost nearly 10 kg. Part of this was due to my eating getting worse again. I had swallowing difficulties due to the tumour strangulating the right vagus nerve. Eventually, I could only slowly and carefully eat liquid food with no bits in it (even tiny bits could choke me). Eating every mouthful was a balancing act between getting enough nourishment versus the risk of choking to death or aspirating food or liquid and getting pneumonia.

At the same time, my voice was disappearing (again, the vagus) and my face, which had been going into spasms on the right, instead became paralysed on the right.

So I was more than ready for surgery. That said, I didn't really believe that I'd have a stroke. After all, I'd lived a healthy life and had none of the risk factors for a stroke...

 

Since 2013...

As one might expect, a lot has happened since my last entry. I will get to it in bits and pieces and in no particular order. 

To give a brief recap - I am now in London and have had 2 more operations to remove new meningioma growths, and have had a full course of stereotactic radiotherapy. The upshot is that despite all the treatment (of which, more later), nothing more can be done and I am now on palliative care only. I don't know how long I still have to live, but the expectation of the medics is that it is months rather than years. 

This blog will chronicle what it is like to be in my body and mind at present, give some history and to detail some of my writing. I will be humorous as well, since it would be too dreary to read otherwise - and too dreary to write! despite it all, so many good things have happened and we only get to do this exciting journey once. 

Pietie November - The MOOC had it coming! #StoryMOOC

#StoryMOOC

This is the official creative task of week 3 of The Future of Storytelling MOOC, run by the University of Potsdam. You can find the course at  https://iversity.org/courses/the-future-of-storytelling

I am to create an on-line presence for a fictional character of my own, with a connection to "Aunt Renie".

He is Pietie November - an amiable character for the most part - and you can visit him also on facebook:

www.facebook.com/PietieNovemberDetective

Pietie November is a character that I introduced into my spoof Cape Town detective story that I wrote for last year's NaNoWriMo (National Novel Writing Month), held on-line in November each year: hence his surname “November” – which is an actual surname in South Africa, dating from the days when slave owners often gave their slaves as a surname, the month in which they were purchased.

Pietie himself is a modern day vagrant – or as they would call him in the Cape Coloured community – a “Stroller” or a “Bergie” (a name dating from the old days when vagrants used to retire up the “berg” – the slopes of Table Mountain – to sleep).

Pietie is small in stature, his face is grizzled. For all we know, Pietie may simply be prematurely aged by constant 24 hour exposure to Cape Town’s capricious weather. He himself is unsure of his age. He speaks both Afrikaans and English – often mixing the two.

Like most strollers, Pietie has a marked sense of humour and is very talkative - and can tell a good story! He is mostly easy-going and is generous with what he finds or is given as a hand-out. That said, he is not above a fight with his fellow bergies when he considers it necessary! Not much damage is done, as everyone mostly only fights if they get too drunk to do much more than scream obscenities and land ineffectual swipes.

Pietie is usually employed these days in “working the traffic” (begging at the traffic lights), a job which he takes quite seriously, though he preferred being a car guard, which he used to work at in town until the “blerry foreigners” (usually refugees from further afield in Africa) took over!

Pietie has been around - well, certainly around Cape Town at least. He currently lives under an overpass near Oranjezicht, near the City centre. He has occasional thoughts of strolling off and visiting the fabled Stellenbosch wine lands – perhaps there he might also find again his “no good blixem” of a girlfriend, Teena, who was last seen walking off in that direction (“going home” to the farm she had run away from) after the Varkies dropped off on the side of the road well out of town an entire group of vagrants (including Pietie and Teena) who had been disturbing the peace in a drunken fight (started, it must be added, by Teena).

Apart from mourning the loss of Teena, Pietie finds Cape Town highly entertaining – and it is his keen observation that has led him to become the first ever Bergie Detective (in Cape Town at any rate). He can come up with clues that others have thoughtlessly discarded and is expert in listening in unobtrusively to other people’s conversations as they walk along the streets. In Cape Town, we call this “picking up stompies” – as in picking up discarded cigarette ends – which Pietie also likes doing so that he can roll his own “smokes” (another use for newspaper). However, a number of forces act against Pietie actually solving his cases – not enough stompies, falling asleep, arguing the case with fellow bergies who confuse the issue for him (blerry rubbishes!), and entirely missing the point – and most of the time, there was no case – but what can you expect? A man is only human after all, and it helps to pass the time!

Until recently, Pietie November had no website at all, being indigent. In fact, until a day or so ago, he had no access to any of the modern media other than watching a bit of the TV in a shop window before the “Varkies” (police) move him along. The nearest he gets to reading is in holding old newspaper scraps that might have held some fish and chips - he calls them "vis 'n skyfies" in Afrikaans - or a “Gatsby”, which is a french style loaf with fillings. Yirra! The smells on those bits of papers tell him a blerry good story of their own!

Anyway – there’s this ou vrou (old lady) who was a tourist. At first Pietie thought that she said she was from Postberg up the West Coast, but it turns out she is from a plek called “Potsdam” in Germany – which is somewhere else. She is a nice ou tannie (old auntie) and she got talking to Pietie after he managed to guard her car by the shops (tourists is mostly always nice, hey!) and it turns out she is looking for all the ouens called November because some of her old folks from way back lived in die Kaap (the Cape) and was owning a farm and all they workers was called November. Now she is looking for them all though they don’t even have the farm any more, and she is putting up something on the computers called Facebook and all of the Novembers will be there – even Pietie! She even said he can call her Aunt Renie because it seems that the old farmer got up to some nonsense back in the day and they might even be family and all!

So now she is putting up a page for Pietie November even though he doesn’t read and hasn’t got any computer to look at it – but it’s nice to think about. Not every stroller has his own page on a computer!

Komachi Monogatari - or - Tales of Komachi.

I have had both enjoyment and employment in writing my book (still unnamed in English) on the 9th century Heian period Japanese poetess, Ono no Komachi.

Originally, I wrote the first story simply as a one-off that juxtaposed and obliquely contrasted the 1001 nights of Sheherazade with the apocryphal 99 nights that a would-be lover sat outside Komachi's window in order to gain her favour. The numerical part of the two stories appealed to me. Interestingly, once I had written the story and was checking details, I discovered the fascinating coincidence that the 1001 Nights was originally written down in the Arabic world at the same time that Komachi was at court in far-off Japan!

I had thought of other stories that bore similarities to one another yet with contrasting outcomes, and decided on writing a series of linked stories with Komachi's frame story to contain them. This then evolved (in the style of Japanese poetry) into four episodes in the life of Komachi, each being narrated in a different season of the year. Later I added an epilogue episode and a prologue that introduced the premise of the book.

The frame story is based on three episodes from the famous (in Japan) "Seven Komachi", a series of seven apocryphal events in the life of Komachi, each with a poem attributed to her that illustrates the episode. I also include one invented episode, in which nothing much happens per se, but which is important to the overall narrative. I have alluded to other episodes of the Seven Komachi at various points in the book.

The fun part was in weaving a number of disparate stories from different eras and countries into the life of Komachi as foci for a fictitious "background' to the writing of her actual poems - a storytelling device that I only discovered later was popular in the Heian Court as a way of illustrating and re-interpreting existing poems!

I did a fair amount of research on each story I told, whether it was one about Komachi herself or one of the "tales within a tale", because I wanted to retell stories that were both accurate and narrated from an original perspective. And so I looked at the earliest historical variants in each story and all sorts of detail surrounding the story at its earliest telling - related stories, religious beliefs, historical and social detail and so on (as any writer will do). Of course, the detail was not to be obtrusively written: a week's worth of research might contribute to a single phrase!

And so - the book contains stories retold or alluded to from as far afield from medieval Japan as Arabia, Britain, continental Europe, Mexico and Alaska. On the Japanese side, I retell the Japanese creation story and retell one of the most famous Noh dramas about Komachi - but giving back to this Buddhist play its original Shinto leaning. I also realised how profoundly Komachi has been misinterpreted in the West (and often by the average modern Japanese person also). Only by thoroughly understanding the old Shinto beliefs and practice can one truly understand and make sense of the Seven Komachi, the Noh dramas that feature Ono no Komachi, and a number of her poems.

Well - not all was hard work..... I tend to go into distraction mode quite frequently. I tell myself that I am allowing my brain time to digest things and come up with a novel story synthesis. But this is what can happen along the way.....

This, good people, takes practice and sustained dedication!!!!

Loving the MOOC

Much as I love taking part in NaNoWriMo, I sadly decided not to take part this year, what with up-coming radiosurgery, a possible trip away, and completing the final edits of a book and searching for a loving agent (and still no title other than my favoured one: but would "Komachi Monogatari" sell in the English-speaking world??).

So I was interested when a friend suggested that I sign up for the free 8 week online Iversity course titled "The Future of Storytelling", offered by the University of Potsdam in Germany. the course is a MOOC - a Massive Open Online Course - now about 70 000 participants strong and in its second week. (Should you wish to join, the posted modules remain up for the entire period and anyone can join at any time - there are brief quizzes and assignments, but your level of participation is up to you - so rush on in and sign up).

I am loving it!! I tend to get so involved in the discussion boards and in following links provided by course conveners and participants alike that it takes me much longer to do the modules than it might otherwise do (the bare minimum could be as little as 10 min, by my reckoning). Today, I have sat about 6 hours - and enjoying every minute of it.

Yes, you could read it in a book (once you find the book). Yes you could find tons on the internet. but it is a guided and enthusiastic process and that is its strength. So far we have looked at storytelling basics and are now into television serial structures.

I'm taking a break for some food, exercise and sleep - then it's back I go!

News of a Tumour (with apologies to Marquez)

After a brief squabble with the postings function - neatly resolved when I discovered that everything works better using Google Chrome (now that sounds like a washing powder advert) - herewith an update on brain surgery and how it fuels the creative process - or how I survived and thrived with brain surgery.

I was probably one of the merry few who looked forward with pleasurable anticipation to brain surgery. To be absolutely truthful, I did have a couple of 5am attacks of "What if....." (what if I bleed to death...?) but I was able to reassure myself very quickly that Allan Taylor is not only the best skull-base neurosurgeon around in SA and one of the best in the world - but he is a neurovascular surgeon and simply will not let me bleed to death!

So I was in for a nearly 8-hour op, during which time the anaesthetist found that I was allergic to opiates, and the surgeons discovered that the tumour was a meningioma (rather than an accoustic neuroma as first suspected) only once they had opened the skull, which meant that they were now not entirely sure of its point of attachment as they began surgery so that Allan as lead surgeon did the entire 7 hours - an epic in itself. Then there was some recovery time in hospital (to still the whirling world and re-focus the double vision), some more recovery time at home (appetite! No pain!) - and I was set to go.

The anaesthetist's remark that I was allergic to opiates triggered in me my version of how young Samuel Taylor Coleridge lost most of his nascent poem, Kubla Khan, including just who the Person from Porlock actually was and what was the manner of his business. In writing the story, I was led into completing Coleridge's poem "Kubla Khan" (and - as far as I am aware - the first ever historical attempt to do this, I might add, unless one were to count Coleridge's own abortive efforts over the rest of his life) so that it became a nearly 400 line poem in the early Coleridge gothic style. It was a highly enjoyable undertaking that took me three months (given that I had composed almost no poetry before and certainly no poem of this length before). The e-book of the short story and long poem can be found on the internet as "Col's Phantasm Speaks".

Awkward tumour!!! Because it had insisted on obstructing some of the lower cranial nerves and making a nuisance of itself by sitting in the jugular bulb where it could not be safely winkled out, besides trying to make a getaway from the skull through the jugular foramen using the jugular vein as a fireman's pole, it needed to be zapped another way.

This happened in late 2011 when I was given stereotactic radiosurgery. In this process, high energy radiation is delivered to the fragment in such a way that the beams are shaped to the exact volume and shape of the tumour remnant. Interestingly, I was far more concerned beforehand about the prospect of radiation than I had been about the prospect of surgery - but all was well. I got to feel what it was like for good folk such as The Man in The Iron Mask and Hannibal Lector - though my thermoplastically shaped head mask was rather more elegantly shaped and they would have done a better job of keeping Lector from being a nuisance if he had a mask like mine - especially once it was being worn and was bolted to the treatment table! One cannot move a millimetre. But then again, one would not want to. I wanted that beam to go exactly to where it was targeted and not a millimetre on either side! (Actually, the machine is programmed to shut down entirely if the beam wavers off target by a millimetre).

Snazzy, custom-made mask!

Red outlines the bit that will be zapped. 

Yellow and Green are bits that must be avoided at all costs if I still want to see afterwards!

Me and the team and a couple of visiting doctors afterwards. 

The massive headache kicked in a few hours later!

Then a long two year wait......... (during which time, among other things, I wrote two short stories involving a whole load of sheep and quantum physics jokes)

Late 2013 - nasty jugular tumour fragment seems convincingly to have died off! Hooray!!!

But....

Did I mention the tiny and insignificant tumour fragment that had to be left in the inner ear canal after surgery? No? Well it seems it did not like being ignored. It correctly figured that it had been considered as being of no account merely because of its size, awkward position and probable lack (at the time) of adequate nourishment. Determined to make the team sit up and take notice, it has managed to treble in size in the last 3 years and, even as I write, is doing a slow motion meningioma crawl out of the inner ear canal, heading off to push the brain stem around, as fast as it can grow. Since it crawls along at a leisurely 3mm per year, we are even now preparing to head it off at the pass. Yup - you guessed it! The little crittur has earned a stereotactic radiosurgery operation all of its own. The experts are even now preparing for it ("Bring on the sharks with lasers on their heads!").

Then it will be another two year wait .....

Can't wait to see what I might write!

What is it to be then? A bit of writing? Or would you prefer brain surgery?

My writing career has had a bit of a rocky start over the last couple of years. Notice the juxtaposition? "Start" and "Years"?

I decided to leave off molecular genetics research to start writing fiction full time in early 2009. But first I needed a bit of recuperation from what I had deduced to be accumulated stress and a dropped shoulder from labwork-induced shoulder strain (all that micro-pipetting!). The shoulder, neck and back pain and stiffness, by now near constant headache and about 3 hours sleep per night over the last couple of years were getting to me. Not to mention the occasional dizzy attacks.

So off I went for some physiotherapy. When the physio gave up in puzzlement after several months of little improvement, off I went to a Body Stress Release practitioner. A few months of a very little more improvement and I gave up BSR as well. In retrospect, the BSR practitioner DID locate the area where the problem originated, but it just made no sense at the time given the presenting aches and pains. And of course there was no way the technique could have helped with the root cause anyway.

The months dripped by. Sitting and typing at a computer for longer than 20 minutes was impossible. I decided to use a dictation programme (Dah Daaah! - Dragon Naturally Speaking - nice programme to use) - but began going deaf in one ear which rather messed things up because the tinnitus and hearing loss in the one ear interfered with my ability to hear clearly with the other and made using headphones uncomfortable. And I still couldn't sit for long enough at the computer to do anything worthwhile! (Even driving for more than a few minutes brought on deep aches in the head, neck, shoulder, arm and back)

In 2010, things went from bad to worse.

The intermittent ear pain I had suffered for many years (variously and imaginatively misdiagnosed over the years by several GPs and Ear, Nose & Throat specialists, given that there was no visible evidence of infection) now became near constant and excruciating.

"Referred pain from the neck and shoulder." said one ENT specialist knowledgeably, "You'll just have to live with it."

"You probably have a narrow eustachian tube." said another ENT, "Hold your nose and blow into your ears to equalise the pressure." (Sounded like a surefire recipe for introducing bacteria).

"Stress-induced temporomandibular (lower jaw) joint wear." decided a third ENT in 2010 even as I walked into his consulting room, "Not much you can do - TMJ wear is a degenerative condition, but you need to sleep with a mouth guard." (Sleep? That would be nice!). I got the mouth guard and all was well - for a week or two. Then I had more excruciating pain than ever and a precipitate loss of most of the rest of the hearing in the one ear. (I still own the mouth guard. It lies in a drawer somewhere).

The hearing loss was also not a problem for the TMJ ENT. "Your hearing range is normal" pronounced He Of The Mouth Guard complacently, after conducting the briefest of hearing tests as a diagnostic formality, during which time he politely ignored the look of pained concentration on my face and the wearying length of time it took for me to decide whether I should perhaps press the hand held buzzer after all to show that I might have heard something tinny and far far away when the near-deaf ear was tested. And of course there was no need for an MRI scan, he said.

In 2010, the headaches of many years had become so bad that I often slept propped up or else woke up in tears during the night. Three hours sleep was a good night! My sense of taste went all awry (alas! Even chocolate tasted absolutely wierd!). I had bouts of extreme exhaustion (recurrent flu, I said to myself) and nausea (recurrent tummy bug, I said to myself) and in between times I had no appetite signals coming in (I often had to be reminded to eat or else I would go all day without food or hunger pangs. Only the actual sight of a meal would remind me that I was starving). Needless to say, I became very thin! (Some people get thinner as they get older, I said to myself). One side of my face and head went "fuzzy" and was sometimes nearly insensate.

Most scientists would have worked out by now that something was severely amiss. (Dear me! Could the fact that everything always went wrong on the right side have been a clue???) - but there always seemed to be a rationale given for the various symptoms - hypochondria, low pain threshold, peri-menopause, stress, neurosis..... I even wondered whether the various physical therapies might not themselves have caused further damage. I wavered between thinking that I must be a real weakling compared to other people and wondering seriously how I could manage to survive the rest of my life in such dire and constant pain!

It was only when half of my tongue went numb and partly paralysed for a week of two in late October 2010 that I realised that something was seriously wrong.

In mid-November, we met the life-saving Professor of ENT at Tygerberg Hospital, Rory Attwood (on whom be heaped much praise!) After a lengthy and meticulously thorough examination, he went the extra mile to arrange a confirmatory MRI scan, an appointment with a neurologist and an appointment with two of the best skull-base specialist neurovascular surgeons in the world, let alone in South Africa. Thus, in the space of less than a week I discovered that I was no longer a whimpering neurotic hypochondriac, but the cultivator (over an estimated period of about 29 years or so) of a respectable golf ball sized tumour in the skull base - the cerebellopontine angle to be precise. Not that I had long to dwell on the diagnosis. In only 10 days I would be having skull-base brain surgery.

What is going on?

Blogger is not working. I can see nothing either when I try to view my blog or when I am trying to see my posts on my dashboard. Rats!

Wherefore art thou, Blogger?

I have recently been having problems trying to publish posts to my blogsite? I have an entertaining little pink message as follows - "An error occurred while trying to save or publish your post. Please try again." Immediately followed by the cheery blue message - "Ignore warning."

Now I still remember the pre-personal-computer days of my undergrad years in Pietermaritzburg, when computer programming meant an elaborate and clumsily inefficient method of using hundreds of punched cards to convey a few instructions which were read by a card reader which functioned a bit like the modern paper money counter in your local bank. Most of my efforts in card punching were pronounced wanting by the reading machine (linked as it was to the Durban campus "server" about an hour's drive away) in robust computer language - "Error! Abort!" it would cry. It was an impatient machine and on the back of more than one or two errors it spat out a final humiliating "Error! Abort! Fin!"

The most pleasure I received from computer programming in those days was marvelling at the wasteful abundance of coloured card papers littering the floor (having experienced war torn and paper destitute Rhodesia) and saving stacks of cards to write notes on (which I must confess also gave me a perverse sense of joy).

Having received such an early insight into the basics of a computer's mind - do I look like the kind of person who is likely to ignore the pink writing in favour of the blue?

Rambly thoughts from 2008 on Books

Tollyported (above) is not an unhappy pair of stories - just a gentle poking of fun at the scientific fraternity from whose ranks I lately emerged, and a gentle spoofing of science fiction and quantum physics. The sheep are serious.

I came across some old thoughts of mine today while sorting out my "Story Ideas" folder -

"I want also to write stories that reflect the gentler part of human experience. My perspective is that it is easier to write stories of negativity and trauma, because the subject matter itself holds a fascination in part for its shock value and in part has the same pull as in motorists slowing down to view an accident scene. The story allows the reader to vicariously experience another’s suffering while actually feeling comfortable that the reader’s own life is different, better organised and that one would not fall prey to the same kinds of blindness, idiocy or bad luck that has led the story’s protagonist into such trouble.

"And yet there is also a kind of subliminal nausea after finishing such a book. There is something pornographic in observing or reading about horror or trauma. In a way, the reader is deriving pleasure out of witnessing another’s pain, even when that other is a fictional character. Thus, “Midnight’s Children”, “Disgraced”, or “Blindness”, for example, are not only profoundly depressing, but leave me with a more sickened view of both humanity in general and the authors in particular. I must add though that "Blindness" does contain a particularly lyrical description of women washing themselves that encapsulates a humane beauty.

"Our current era is absorbed with pain and disappointment, and more so with disillusionment. This is justified as being “gritty”, “revealing the truth of the human condition”, “exposing the mean underbelly”, “telling it like it is” and a host of other stock phrases. The fact is that a large number of modern novels are clichéd. The clichés vary with the specific society that the novels come from. And in the end, the story-lines are banal.

"Thus, the stock modern female English novel generally concerns the boredom of urban or well-off country life, leading the protagonist to attempt a search for “meaning” – which predictably devolves into the standard substitute for “finding oneself”- the affaire with a least-expected someone, and by a string of tawdry revelations concerning the lives of all those in one’s family, set of friends / village or suburb – and no transcendent resolution.

"Much of the magical reality of South America, when one has read enough of it, is poetic but seamy and is ultimately depressing.

"Indian novelists write agonised and confused renditions of family histories. As the story progresses, the trials of the increasingly despairing and unfortunate protagonist, hopelessly and inappropriately in love, are interspersed with miraculous occurrences, mothers and masala.

"South African novels are so often stark and depressing in their jaundiced view of humanity that they are best read to the swishing accompaniment of the flail across one’s shoulders.

"Russian and east European novels still express grimly despairing fatalism in the tradition of the major eighteenth and nineteenth century Russian novelists – a long litany of suicide, murder, madness, betrayal and tuberculosis, where Chekov’s plays were considered the ultimate in frivolity. Must be something about the weather.

"This is not to say that the novels themselves are not beautifully and memorably written. But there comes a point when I think – is this all there is? Why is it so difficult to write strong and beautiful stories for adults that reflect and explore the kinder, altruistic, humane part of human nature without burlesquing them (as in “The No. 1 Ladies’ Detective Agency”) or appearing “Pollyanna-ish”?

"Of course, as I write this, there immediately spring to mind a large number of stories that do celebrate goodness – Mitch Albom’s “The five people you meet in heaven”, Ray Bradbury’s books, particularly his highly poetically written “The illustrated man” (the ending is utterly transcendent), “A good man in Africa”, Marquez’ “News of a kidnapping” and Vonnegut’s “Bluebeard” – but the stories still are achieved through relating disturbing or traumatic events. Is it at all possible to write a fascinating story (a very short story??) that concerns the illustration of simple goodness, or love in quiet circumstances?

"Actually – I can answer that – the traditional adventure story allowed the characters to be display all that was considered rational and civilised - their resourcefulness, nobility, and determination - as they wrestled externally with new environments or rescued people from suitably faceless massed hordes – another version of the hero’s journey. Rider-Haggard’s and Jules Verne’s stories, “The Coral Island” and “The Swiss family Robinson” spring to mind. Yet these have predominantly come to be considered out-dated children’s stories. And the traditional adventure story has been re-written introspectively by the likes of Conrad (“Heart of Darkness” being the all-time classic here), “Lord of the Flies”, some of D H Lawrence’s tales based in South American settings, and slightly satirically in H G Wells’ “The History of Mr Polly”.

  

 "This has become a long ramble that reduces into my loving many books for many reasons, but not wanting to write on the current stock grim socio-politically correct, socially relevant themes."

The Long Road to Recovery

Amy in Hospital

Somehow we find the strength to do what we have to do when we are put in charge. I rationalise that the only reason I could stand there frozen in shock and screaming during the actual accident was that Guy was there and I had full confidence that he would act - as he did.

Thereafter, I had managed to run around doing whatever was needed (including getting another lad under the shower once Amy was in the bath, since he had had a relatively minor flash burn from the explosion), and then to be calm for Amy while she was in the bath, stopping her from hyperventilating and holding her - and she was so very brave despite the terrible pain she was in. I had managed to be calm for Amy in the ambulance when she screamed deep blood curdling screams all the way to the hospital because the movement of the ambulance caused her agonising pain and there was nothing to ease the pain bar one inadequately sized burn shield.

But as soon as I handed her over to the nurses' care and they began infusing her with morphine, I began to faint and had to go and lie down myself. ER filled up with family and friends - and I was the only one fainting and shaking and nauseous! Even Amy was joking now that she had enough morphine in her to sink a battleship.

Part of my reaction was the after effect of shock and part was from knowing that this was only the beginning for Amy. The extent of her burns was that both of her thighs were burned all round and on her right leg the burns extended to half way down her calf. Her left hand was burned and there were two small burns on her upper arm and chest.

Her initial surgery for debridement and dressing took three hours instead of the original estimation of one hour given to us - causing me further nausea from fear. And I continued to shake and feel nauseous for the next two days, until I woke one morning and realised that the flames were over and were actually in the past. After that, I actually coped better emotionally than Guy.

Guy's was the hero part - and mine was the part of mothers since time immemorial - nursing one's child. The hospital was very good about letting me sit all day with Amy - keeping away as many visitors as possible, trying to get food and drink into her, and doing all the many tiny errands that she could not do for oneself, since for several days she had to remain mostly in the same position. Being helpless was especially tough for my highly independent daughter! In particular, she needed to have her feet carefully massaged every few hours - which I enjoyed doing for her. The right foot (the more badly burned leg) was swollen because the lymph drainage in that leg had been compromised and so that foot in particular had to be gently massaged often to encourage deeper tissue drainage.

Amy was remarkably positive overall and was both popular with the nurses and impressed the senior medical staff with her keen interest to know what was going on so that she could prepare and adapt(though the moment the pain meds started waning she was in terrible pain again) and set herself goals no matter how small to move herself towards healing. Amy is a little person and there was a lot going on in her body for her to cope with. And from my part it was not all just sitting patiently waiting for Amy to leave hospital. Every day brought another challenge and we could only live through it all from moment to moment – and I did worry profoundly, though I kept it away from Amy for the most part.

I had not realised beforehand how complex a burn injury is, particularly a flame burn.

Firstly - the burns are of uneven depths and this alone makes dealing with them complex.

Secondly - the tissue damage continues to develop beneath the surface of the burnt area for the next five days or so (which is also why first aid by lengthy water immersion to draw away the heat is so important to limiting the damage). So no skin grafting can be done before the wound stabilises. Every 2 days or so, the surgeon assessed the damage as he cleaned and redressed the burns while Amy was under general anaesthetic. And of course having general anaesthetic every couple of days brings its own set of problems, not least that Amy’s veins in her arms were taking great strain!

Thirdly, because the skin barrier has been destroyed, burn wounds leak like a sieve. The body loses not only fluid, salts, vitamins and so on, but also blood proteins, like albumin which buffers the blood pH and antibodies that fight infection.

All this leakage has effects on blood pressure and kidney function. For several days in hospital, Amy’s blood pressure was about 60/40 and her heart rate was well over 100. There is also a risk that blood vessels in the burned area can become blocked or collapse, promoting infection, stroke or heart attack.

Part of the answer is to drink as much as possible and eat lots – especially protein. The dietician prescribed protein supplements – which have to be balanced and low fat. Then extra vitamins are needed, especially D (to boost immune function) and C and Zinc.

Part of the problem was that Amy, who has had a tiny appetite since birth and now was nauseous and probably a bit out of it from morphine – refused to eat or drink! Part of the solution was mother constantly making sure that something was going in – and at one point actually having an angry argument about it – mere days from being so grateful that Amy had survived! And part of the solution was Amy's uncle, who is a chef, making her a series of delicious appetite tempting soups!

Tissue leakage also raises the risk of infection – both from normal skin surface bugs (mostly Streptococcus, Staphylococcus and Pseudomonas) proliferating on the nice leaking serum (which smelled much like the foetal calf serum which we used in the lab as a tissue culture medium additive!) – and from the risk of pneumonia. Hence the isolation ward. Fortunately, Amy had only two mild surface infections – treated with silver dressing.

She was also lucky that her surgeon did a research PhD and as a result was more ready to try new treatments (while remaining properly cautious of course) – and so she was one of the first people in Cape Town to extensively use Suprathel, a German polymeric artificial skin covering that encourages better healing of burn wounds and reduces infection. Thanks to this, Amy’s hand needed no grafting as had first been estimated and healed beautifully, and the extent of grafting needed on her legs was dramatically reduced.

Amy taking her first few assisted steps from the bed to the chair after one week in hospital

Another factor is that the immobility and tissue damage leads to joint stiffness and so Amy had to have daily physiotherapy to move her joints and to relearn to walk (as she said, like a baby and then like a granny) – big cheers as she stood (and remember that her blood pressure was very low), then as she took a step or two, supported by the physio and me (this took place after her painkillers were given!). After a few days she could shuffle along the corridor and then climb a few stairs with assistance. This exercise all came to a temporary end once the grafting was done.

Amy and friends one day after admission - Amy on heavy morphine!

Note her bandaged hand had been decorated as a dog's face by her boyfriend's father.

This bandage was removed after a few days and replaced with a heavier cast to keep her fingers straight.

There was an additional “problem”. Amy is very pretty and was being very positive (and was on heavy doses of pain killers), so apart from her bandaged arm, no visitor could really see the damage to her heavily bandaged legs and thought that she was stronger than she actually was. Amy enjoyed visitors but the visits really tired her - and I was paranoid about infection. So I had to play gate-keeper and in the end we put up a notice on her door for a week or so saying please no visitors.

No two burn wounds are ever alike and the surgeon has to assess the wounds every time he does a dressing change. There is a window for optimal grafting success and the surgeon has to balance between waiting to see how much healing will happen spontaneously and not waiting too long to graft.

Finally, the surgeon announced that he would have to do some grafting. We all knew that this would be the case, yet when actually faced with the prospect – and seeing his photos of her legs, which was the first time that I had seen what they looked like since she went into hospital – I became nauseous and felt like collapsing again. On hearing that she needed grafts, Amy cried for the first time since being in hospital. Having said that, we were all grateful that she was in a position to be able to have grafts!

Amy was also extremely lucky that although she has had grafts above and below the back of her right knee joint, the skin in the fold of the knee was still intact, and so she has no joint mobility problems from having a single graft over the back of the knee.

Fortunately as well, the upper thigh of one leg still had some original skin on it and this became the graft donor site. Of course this necessarily created two new wounds.

Because of the positions of the grafts and because the first five days are critical to the grafts taking, Amy had to be completely immobilised in bed with her leg in a splint for five days.

Finally, Amy was allowed to go home – but that was by no means the end of it!

After Much Reflection...

Over the past few months I have drafted a couple of attempts to describe our family's experience of our daughter having been burned and its aftermath, but the trauma was still too fresh to share in a public forum.

But since we are a few days away from it being six months since the accident happened, I will give some brief notes and impressions.

First - DO NOT EVER pour any flammable substance onto a fire, no matter how dead the fire may look. A five litre container of paraffin and a very small almost dead fire in a small fireplace in a civilised lounge on a Sunday afternoon in the middle of town where a bunch of highly educated people have gathered is no guarantee that the laws of physics and chemistry will be suspended. (The person who attempted this feat was not Amy by the way and the house was not ours). Five litres of fuel that catches alight is essentially a fire bomb.

Second - No one can move as fast as a parent does on hearing their child scream, no matter what the age of that child. Without even knowing what had happened, Guy and I catapulted from the dining room. Another guest said later that she had never before seen anybody move so fast.

Third - terror and disbelief don't help. When I saw my daughter run past me with her legs on fire and then go up in flames and fall to the ground in the passage way so that all I saw were the flames and I heard her scream that the fire wasn't going out - and I thought with terror and horrified disbelief that on a sociable Sunday afternoon lunch date I could be watching my daughter die in front of my eyes, all I could do was scream as well. I do realise that it was actually only for three seconds at most and that Guy was closer to her than I was - but when someone is burning screaming is a luxury that cannot be afforded.

Fourth - Guy was the unmistakeable hero here and saved our daughter twice that day. With absolutely single-minded focus he flung himself onto her to smother the flames. He saved her actual life and by stopping the flames going higher he saved how she would live her life. His shouting instructions all the while also galvanised everyone. Amy's boyfriend put out the flames on her hand and I ran to collect cushions to smother the flames that were still whooshing around her legs.

Fifth - Clothes are important! Guy was wearing a wool coat and jeans or else he would have gone up in flames too. Amy was wearing a close-knit cotton jersey under her synthetic jacket - which is what went up as I saw her fall. The jersey saved most of her body from being burned. Incidentally, Amy had actually dropped because she remembered to "stop, drop and roll" (which did not put the flames out but it did slow them from travelling vertically up her body).

Sixth - Have plenty of people to hand. The lounge was also on fire of course and the house an old Victorian one - so a bunch of guests were available to contain and douse that fire.

Seventh - Time! In a fire you don't have much of it at all. We estimate that Amy was on fire for all of ten seconds and that alone gave her 15% body area mixed depth burns, needing five skin grafts. Amy thought it was thirty seconds and the surgeon said that thirty seconds would have been fatal.

Eighth - Water! You need as much of it as you can get. As soon as the flames were out, Amy was carried to the shower and kept there until a bath of water was run and then kept there for half an hour to remove some of the heat before Guy would allow the ambulance to arrive. The plastic surgeon said that this was the biggest single factor in altering her medical outcome. The long immersion also resulted in Amy's burnt clothing coming away easily from her body instead of sticking to it.

Ninth - Position position! Our friends' house was less than two minutes away from a hospital.

Tenth - Medical Skill! The plastic surgeon on call that night who became Amy's attending surgeon is one of the most meticulous and forward-thinking plastic surgeons in Cape Town. (We later discovered that he attended the same school in Welkom as Guy!)

Tenth - Medical aid! Never under-estimate the importance of having this. One month in hospital and nine theatre visits comes to over R350 000 (for non-South Africans, look up the current exchange rate).

That's enough for this post. I'll continue in the next.

Why No Entries Since Early June?

Two reasons - and both to do with my daughter: one happy and one devastating. Only now are we normalizing as a family and only now can I bring myself to relate it in this blog.

The happy part was our daughter's matric dance, which she had been long looking forward to. The horrendous part happened merely two days later, when she was badly burned in a fire at her boyfriend's house. It has been a long road to recovery since then.

I am now able to relate these events. I would like to begin with Amy's matric dance.