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.