In the process of writing this blog, I've realise that my intentions for it have changed over time. Broadly speaking, they've gone through the following stages:
With that third one in mind, here are some of the negative (physical) things that I've experienced since my operation, what I did to try and limit them and roughly how long they lasted.
Some of them are still ongoing now, around five weeks after my operation, but they are all improving.
My tumour was located in the right temporal lobe, which meant to get at it the surgeons had to cut through the muscle located between my ear and my eye, which I think is called the 'pterigoid'. Not sure though. To be honest it looks like I've just made that word up, doesn't it?
This initially swelled up profusely, and accompanied with the water-balloonesque swelling from the liquid from my brain and wound, was very tender to the touch.
I am still having some trouble opening my mouth very wide, but this seems to be improving every day. My standards are pretty high with this, as I could previously fit my fist in my mouth. Not entirely sure how I found that out, but I could.
I wish I had been told sooner that it is a good idea to work the muscle, as otherwise it scars over and can have long-term effects. I only got told this the other day, by accident.
So even if it's painful, keep chewing.
Update - It's now 22 October and I still can't fit my fist in my mouth. Fucking NHS, ruined my sex life.
The tip of my tongue also felt numb. To some extent I still feel that, and I have the strange feeling that I can't poke it out very far.
It would be over the top to describe what I was feeling as pain, and at around two and a half weeks after the surgery, the feeling was barely noticeable. However, until then, it really bothered me.
Eating, which I've been doing a lot of, hasn't been very pleasurable. Along with my inability to open my mouth much wider than a few centimetres or to chew, my tongue's numbness has meant that I'm concentrating more on not dribbling all over myself than on what my food tastes like.
This hasn't stopped me from ingesting all manner of biscuits, chocolate and other sweet things, though.
And, although I'm beginning to feel the pounds piling back on (having lost a fair bit of weight since giving up drinking in May 2011) I'm seeking solace in hobnobs smashed up in ice-cream, doused in chocolate sauce that goes hard when it gets cold. Awesome.
(What was it that they put in Ice Magic that means you can't get it any more? I'm putting all future earnings into proving direct causal links between me not eating Walls Blue Ribbon ice-cream with Ice Magic on top and me having brain tumours.)
Update - 22 October - In the last two weeks or so I've noticed that the tingling sensation has changed. Now, instead of feeling it when I touch the area, I feel it in other places. If I touch the right hand side of my mouth I can feel it in my right cheek and eyelid, and vice versa. Very odd. Nerve damage I imagine, I'm waiting to get an appointment. It's not a life or death problem, but it's annoying. I constantly feel like I've got an eyelash just about to go in my eye.
It disappeared with the swelling, but for a good couple of weeks if I was to press any part of it, I could feel liquid moving around under my skin. It felt hot, and bitty. And really fucking hurt.
Whilst I had been in hospital I had been hooked up to some kind of drain that was allowing excess fluid out of my head, and I'm not sure, but perhaps my skull as well. This was a one and a half litre bell jar, and it filled up almost two times. The stuff inside it looked like someone had got a big bottle of Ribena and thrown half a bag of chewed up, gooey sweets in it. Yummy.
When I was let out, my swelling seemed to continue to come up, and with nowhere for it to go, it just stayed in my face. This face-ache was pretty much nonstop. But worse than my facial deformation, was the noise that it made.
It then started to conquer my right eye, making my eyelid twitch with every beat. Hours later, when I was lying in bed, I could feel it clicking in my ear. This was unbearable.
It wasn't even as though it was a regular beat, I couldn't just get used to it. It would also stop at any given moment, and I'd frantically try to guess what I'd done to make that happen - then a split second later, seemingly by moving my head a millimetre, it would start again, this time even louder.
This noise and the feeling through my head became the bane of my life for about ten days - which felt like a year. I would manage about an hour or two's sleep a night, and my mood reflected that.
I'd like to make a public apology now to everyone that came anywhere near me during 'Clickyheadgate'.
Eventually though, my swelling started to go down. Now, five and a bit weeks after the operation, there is still some swelling around the side of my head that they operated on.
It's strange to look at, as one side of my head is visibly wider than the other, but it's not a bad trade-off for not having a brain tumour.
For the first few weeks, especially when my stitches were still in, it itched like mad. This went away promptly when my stitches were removed and I could wash my hair properly and daily without worrying about getting the wound too wet.
Stay out of direct sunlight, getting burnt on scars (not that this happened with this scar) hurts. Try and stay away from mosquitos as well, they seemed to like the scar tissue, and liked the swelling too - maybe it's a big volcano of blood under there for them to drink.
At times it felt as though my head was going to explode. This was the case for some time after the op. It of course proved more of a problem when I got home.
When I was discharged, five days after my operation, I thought that I would be sent away with a plethora of different drugs to make some kind of pain-numbing, sleep-inducing cocktail that would allow me to sleep a bit and function slightly - if only like a doped-up monkey.
What actually happened was that we waited for half an hour before being told that I was just going to get paracetomol.
Normal 500mg tablets. The ones you find in handbags and can buy in a garage. Feeling slightly bitter about my lack of spiritual enlightenment brought on by medication, I suggested we just go to the chemists and buy our own. Which we did.
On the first night back, Helen called NHS Direct and in the end an emergency doctor came out as I was in an intense amount of pain. They could only offer to take me into A&E, so I told them that I'd rather languish in bed.
The next few nights were pretty hellish. I was downing pain relievers at some rate, but I was still experiencing pretty drastic headaches. It helped to have someone stroking my head, so I employed Helen to do this for me, and she appeared even more angelic than usual.
If you don't have a Helen to hand, buy some cooling pads. I scoffed at them when they were given to me, but they really did work. You just look a bit of a nob.
I eventually got some cocodamol via my GP. I stopped taking it though because the constipation was more painful than the brain-ache.
(It reminded me of when I had a fish bone stuck sideways in my rectum in Brazil. Still haven't written that post in the other blog. I should do soon, that's a story that simply must be shared with the world.)
In general, though, if you're reading this and you're in physical pain after you've had brain surgery, hold onto this thought in your head - you're not dead.
Plus, if you're reading this, you're not blind either. Well done you!
- At first it was just going to be something to keep me occupied and get me writing again.
- Then I realised that it might be something a little more than that, a way for me to vent my worries, stresses and anger about what was going on.
- I then thought that it might actually help people in a similar position to me. When you look to the internet for information on epilepsy - let alone brain tumours - so much of it is negative you can be led to believe that there will never be a happy ending.
With that third one in mind, here are some of the negative (physical) things that I've experienced since my operation, what I did to try and limit them and roughly how long they lasted.
Some of them are still ongoing now, around five weeks after my operation, but they are all improving.
Jaw ache
Depending on what part of your brain is being operated on, the surgeons will have to cut through different parts of your skull.My tumour was located in the right temporal lobe, which meant to get at it the surgeons had to cut through the muscle located between my ear and my eye, which I think is called the 'pterigoid'. Not sure though. To be honest it looks like I've just made that word up, doesn't it?
This initially swelled up profusely, and accompanied with the water-balloonesque swelling from the liquid from my brain and wound, was very tender to the touch.
I am still having some trouble opening my mouth very wide, but this seems to be improving every day. My standards are pretty high with this, as I could previously fit my fist in my mouth. Not entirely sure how I found that out, but I could.
I wish I had been told sooner that it is a good idea to work the muscle, as otherwise it scars over and can have long-term effects. I only got told this the other day, by accident.
So even if it's painful, keep chewing.
Update - It's now 22 October and I still can't fit my fist in my mouth. Fucking NHS, ruined my sex life.
Tingling sensation and numbness in face
For around three weeks I had a tingling sensation, not unlike pins and needles, in my right cheek and the right hand side of my lips. When I had hair on my face (I don't feel confident enough to describe my bum-fluff as stubble), it seemed to be accentuated.The tip of my tongue also felt numb. To some extent I still feel that, and I have the strange feeling that I can't poke it out very far.
It would be over the top to describe what I was feeling as pain, and at around two and a half weeks after the surgery, the feeling was barely noticeable. However, until then, it really bothered me.
Eating, which I've been doing a lot of, hasn't been very pleasurable. Along with my inability to open my mouth much wider than a few centimetres or to chew, my tongue's numbness has meant that I'm concentrating more on not dribbling all over myself than on what my food tastes like.
This hasn't stopped me from ingesting all manner of biscuits, chocolate and other sweet things, though.
And, although I'm beginning to feel the pounds piling back on (having lost a fair bit of weight since giving up drinking in May 2011) I'm seeking solace in hobnobs smashed up in ice-cream, doused in chocolate sauce that goes hard when it gets cold. Awesome.
(What was it that they put in Ice Magic that means you can't get it any more? I'm putting all future earnings into proving direct causal links between me not eating Walls Blue Ribbon ice-cream with Ice Magic on top and me having brain tumours.)
Update - 22 October - In the last two weeks or so I've noticed that the tingling sensation has changed. Now, instead of feeling it when I touch the area, I feel it in other places. If I touch the right hand side of my mouth I can feel it in my right cheek and eyelid, and vice versa. Very odd. Nerve damage I imagine, I'm waiting to get an appointment. It's not a life or death problem, but it's annoying. I constantly feel like I've got an eyelash just about to go in my eye.
Liquid build up, swelling, and a squelching noise in face
One of the most surreal things about my recovery has been the squelching noise inside my face, running from the top of my forehead where my stitches start, past my temple and down through my cheek to my mandible.It disappeared with the swelling, but for a good couple of weeks if I was to press any part of it, I could feel liquid moving around under my skin. It felt hot, and bitty. And really fucking hurt.
Whilst I had been in hospital I had been hooked up to some kind of drain that was allowing excess fluid out of my head, and I'm not sure, but perhaps my skull as well. This was a one and a half litre bell jar, and it filled up almost two times. The stuff inside it looked like someone had got a big bottle of Ribena and thrown half a bag of chewed up, gooey sweets in it. Yummy.
When I was let out, my swelling seemed to continue to come up, and with nowhere for it to go, it just stayed in my face. This face-ache was pretty much nonstop. But worse than my facial deformation, was the noise that it made.
When squelching turns to clicking
It started in my temple. I could feel what I think was my heartbeat resonating in this liquid.It then started to conquer my right eye, making my eyelid twitch with every beat. Hours later, when I was lying in bed, I could feel it clicking in my ear. This was unbearable.
It wasn't even as though it was a regular beat, I couldn't just get used to it. It would also stop at any given moment, and I'd frantically try to guess what I'd done to make that happen - then a split second later, seemingly by moving my head a millimetre, it would start again, this time even louder.
This noise and the feeling through my head became the bane of my life for about ten days - which felt like a year. I would manage about an hour or two's sleep a night, and my mood reflected that.
I'd like to make a public apology now to everyone that came anywhere near me during 'Clickyheadgate'.
Eventually though, my swelling started to go down. Now, five and a bit weeks after the operation, there is still some swelling around the side of my head that they operated on.
It's strange to look at, as one side of my head is visibly wider than the other, but it's not a bad trade-off for not having a brain tumour.
Update - 22 October - A Clickwork Orange - It came back for a while about a fortnight ago, this time round the back of my head behind my ear. It has, touch wood, gone again. Sorry, should have updated this sooner. Appy-polly-loggies. I had something of a pain in the gulliver so had to sleep. I was not awakened when I gave orders for wakening.
Scar tissue
I was very lucky that the surgeon who operated on me obviously recognised a beautiful thing when he saw it, and took extra care as to how he cut my head open. My scar is barely two millimetres thick, and is all within my hairline.For the first few weeks, especially when my stitches were still in, it itched like mad. This went away promptly when my stitches were removed and I could wash my hair properly and daily without worrying about getting the wound too wet.
Stay out of direct sunlight, getting burnt on scars (not that this happened with this scar) hurts. Try and stay away from mosquitos as well, they seemed to like the scar tissue, and liked the swelling too - maybe it's a big volcano of blood under there for them to drink.
Headaches (which I imagine people could call migraines - never had one myself, but if that's the feeling you get when you have one - fair play that's an unlucky condition to have)
At times it felt as though my head was going to explode. This was the case for some time after the op. It of course proved more of a problem when I got home.
When I was discharged, five days after my operation, I thought that I would be sent away with a plethora of different drugs to make some kind of pain-numbing, sleep-inducing cocktail that would allow me to sleep a bit and function slightly - if only like a doped-up monkey.
What actually happened was that we waited for half an hour before being told that I was just going to get paracetomol.
Normal 500mg tablets. The ones you find in handbags and can buy in a garage. Feeling slightly bitter about my lack of spiritual enlightenment brought on by medication, I suggested we just go to the chemists and buy our own. Which we did.
On the first night back, Helen called NHS Direct and in the end an emergency doctor came out as I was in an intense amount of pain. They could only offer to take me into A&E, so I told them that I'd rather languish in bed.
The next few nights were pretty hellish. I was downing pain relievers at some rate, but I was still experiencing pretty drastic headaches. It helped to have someone stroking my head, so I employed Helen to do this for me, and she appeared even more angelic than usual.
If you don't have a Helen to hand, buy some cooling pads. I scoffed at them when they were given to me, but they really did work. You just look a bit of a nob.
I eventually got some cocodamol via my GP. I stopped taking it though because the constipation was more painful than the brain-ache.
(It reminded me of when I had a fish bone stuck sideways in my rectum in Brazil. Still haven't written that post in the other blog. I should do soon, that's a story that simply must be shared with the world.)
In general, though, if you're reading this and you're in physical pain after you've had brain surgery, hold onto this thought in your head - you're not dead.
Plus, if you're reading this, you're not blind either. Well done you!
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