Note to readers: I am no expert in this stuff. Nothing in this blog should be taken as medical or psychological advice. In fact, I’m writing it in what is still realistically a post-operation haze, so my opinions are probably coloured accordingly. I have gone from diagnosis to operation to recovery in a little over a week, so my impressions are dazed and confused. There are picture of scars, staples and swellings within, if that isn’t your bag.
Meningioma is described as ‘the sugeon’s friend’ (by surgeons, it must be said) as it is almost always benign, relatively easy to operate on, and can make big difference to someone’s life when removed.
But as a sufferer, the surgeon’s viewpoint doesn’t change the fact that you are looking down the barrel at brain surgery. Brain surgery is no picnic.
The operation itself
Of course no two operations are the same. Your tumour isn’t my tumour isn’t her tumour and isn’t his tumour. If you are lucky, as I was, the op can take under a couple of hours to perform. More complex rumours in harder to reach places can take much longer. Your surgeon *will* talk it through with you. Listen to them to understand what they will be doing. In practical terms, your own understanding will make no difference, but I suspect going into these things with eyes wide open is the best kind of preparation for the aftermath.
I’m neither therapist nor surgeon but prepare yourself as best you can by concentrating on the end goal. The surgery might be painful and you might be set up for weeks or months of turbulence afterwards but in the long term, you’re setting something very serious right.
When you come round, you will probably be in a recovery room rather than your own ward. This room is where the anaesthetists can monitor you as you wake, checking your vital systems and so on. You might even find the surgeon present to try and engage you in conversation for a first impression ‘heads up’ as to your mental functions.
Unfortunately for me, I actually woke up as I was wheeled into the scanning room for an emergency CT scan. Immediately after the operation I suffered a further seizure, likely a side-effect of the operation. This isn’t uncommon, as the operation takes place on the surface of the brain – the stimulation of which is liable to cause seizures.
Let there be no doubt. Someone cutting your head open causes disfigurement and pain. It may be minor op in the grand scheme of things to a surgeon, but that means next to nothing to you. At the end of the day, this is invasive surgery into your head. Your skull has been cut open, you scalp peeled back and various implements brought to bear directly on your brain. That hurts. No two ways about it.
Not only that, but your head will have been held in place during the operation with a frame to hold everything in position should you start to have a seizure during the actual surgery itself (a thrashing head being that much harder to operate on). This is fastened to your head via pins which are inserted under your scalp. These leave unattractive small puncture wounds around your head, which may weep blood and other fluids.
With all this going on, pain is no surprise. The nature of the pain probably varies from person to person and nature of both the surgery and the tumour itself. In my instance, the pain has primarily manifested itself as a near-constant feeling of pressure in my skull, feeling much sharper during the night as I lay on my side – an act which presumably actually increases the pressue.
Sleep & Confusion
You will be tired. Operations of any kind sap you of energy, despite asking no more of you than to lie on a table. The lingering effects of the anaesthetic coupled to the physical side effects of the operation mean that when you first begin to wake up you will do so haltingly and probably in some confusion. Falling back asleep is almost inevitable. Welcome it, for the next couple of days you will find sleep hard to come by.
After your first proper spell of consciousness, you will inevitably begin to fall asleep – as even a minor conversation is tiring in those first few hours. You may find yourself slightly confused and disorientated.
During this initial spell of waking, you will be asked questions by the nurses as they take your blood pressure and heart rate every couple of hours. These are standard questions along the lines of “what year is it?” “what month is it?” “where are you?” and “why are you leering at my uniform?”.
In the days following, you might find that you are unable to return to sleep upon waking in the night. My experience has been exactly that: as well as the pain itself, I have found myself massively overstimulated in the night, with my brain apparently set on hyperdrive. I’ve found myself writing emails, sending texts and reading books with feverish hands despite being wrapped in a fug of pain and drugs.
This naturally effects the day/night/sleep/wake balance. At the time of writing, I haven’t got anywhere near a natural bodyclock rhythm going on.
The pain relief available for such a major piece of surgery seems, to me at least, to be fairly minimal. Paracetamol is, incredibly, the first line of defense. Suitable perhaps for a hangover, I’ve decided it does near to bugger all in the case of head surgery wounds. Better is Codeine. Codeine is an opiate, however, and comes with its own set of problems. While it may alleviate the pain, I suspect it also has a part to play in the agitation and confusion that has been descending during the night.
Other people I know that have been on Codeine have reported “visions” and as I found myself trying to summon Legolas the Elf for help in the night, I can only suspect there’s some truth in that.
On the second morning after my operation, I was more than a little alarmed to discover that I couldn’t see out of my right eye. My face – fine when I went to sleep – was hugely swollen to the extent that opening my eye was impossible. The picture herein was taken after a couple of doses of drugs, but you still get the idea.
My first instinct was panic: possibly everything in those first few days results in panic. Is this a symptom of something else? A further complication? In fact, it is a perfectly normal part of the post-surgery period.
Pills are given to help alleviate the swelling, and you might be surprised at how efficacious they are at returning your face to some kind of less child-frightening normality.
The old rubrick is that chicks dig scars. That’s as maybe, and is fine in the abstract, but you are looking at proper scars. Even with my distantly receded hairline, the surgeon did his best to protect my looks (my face clearly being my fortune) but as you can see, it wasn’t a total success.
Speaking to other patients on the ward, it was clear that even when the scarring was kept under the hairline, it was still definitely visible.
For me, not particularly giving a shit about my appearance and clinging onto the faint notion that actually a dramatic scar would add to my visual allure, this is no biggie. But, if your looks are genuinely important to you then do some mental adjustments. Your world is changing.
You will have staples and stitching, blood and discolouration to deal with. People find it disconcerting. Moving among normal people with a head like this is enlightening. While causing tears in one playground mum, I’m also pretty sure I got extra topping on my ASDA pizza, which probably reflects the cosmic balance.
First line of practical defence are the nurses. They are actually present all the time and have seen everything before. Call on them for pain relief, help with the toilet, whatever.
Second line of defense: friends and family. Visiting times might be rationed, but mobile phones seem to be accepted in hospital in this modern internet age. Be in touch. Let people know how you’re feeling. But also remember that they too might be suffering. Practically speaking, spouses have an equal – perhaps greater – load to carry. They have to watch you going through the shit and be effectively powerless to help. Most likely, they are also juggling normal life: kids, shopping and other rigmaroles that normally are a shared burden. So take time to reassure them, even if you don’t feel like it.
Third line of defence – and not to be underestimated is YOU. Chin up. Face the world. Shit happens. Accept it. Reliance on others is one thing, but ultimately you’re the one who’ll have to face life with visible scars, painful memories and the new realities of life. Don’t underestimate yourself though. The saddest sight of my time in hospital was seeing the guy in the bed opposite, practically collapsing before his operation was even booked. “Paul… what about the depression?” he asked, within mere hours of me arriving back on the ward.
Don’t allow yourself to start from that position. I can’t conceive how you’d recover. People come back from a lot worse and you are no less a person than they.
It’s early days, but the memory of the thin, disapproving smile as the occupational health advisor looked at the table of sweets and biscuits next to my hospital bed immediately set my teeth on edge. Two days out of brain surgery and the lack of sunflower seeds and healthy raw vegetables on display was clearly antagonistic to this person.
I’m probably being over harsh here, but having just come through an extremely harrowing moment of my life, to find myself the subject of a prim little lecture about getting enough exercise was enough to excite thoughts of violence. “Perhaps we should say,” she began “one packet of sweets then one walk?”
Listen up, buttercup: I got bigger shit to fry here than my BMI. I’m walking out of here and plan on outliving you by several decades.
They do make you run through some tertiary testing of your mental faculties, which is worth paying attention to. I struggled to name objects beginning with ‘p’ which tells me that despite my bravado there are still misfiring synapses somewhere. They also take dimly to smart-arsery. My answers to “name as many animals as you can” (axolotl, ocelot, babirusa, tapir, pangolin, hyrax etc) were received with a chill – evidence in her eyes that I wasn’t taking the test seriously enough rather than (as I thought) evidence of a sparkling intellect and functioning memory.
Anyway, my patience for this first post-op update is at an end. I’ve been up since 1am more or less and feel a little like a Play-doh moptop hairshop figure. Sleep beckons. Take care.