I can't tell you how often I've been asked, 'What's it like having a seizure?'
Actually, it's never. Not one person has ever asked me about what's probably one of the more interesting events in my life. Either you're just being polite or you don't actually care, but, ever the cynical optimist, I'll assume it's the former.
I write all this because I had another one within the last week. Only my fourth ever, and comes only a few months after my relapse earlier this year.
The first sign of a seizure, or at least my seizures, come in the right hand and then arm. It becomes uncontrollable. Flailing. It's one of the most frustrating feelings to want your arm to go one way and it goes the other. The more I try to get back in control the worse it seems to get.
This was my first seizure from a standing position. That, of course, meant I had to negotiate myself to the floor without injury if possible. I managed to shout for help, before I gently, climbed to the floor and started vibrating wildly
Although I remained conscious for what followed, things become a little foggy at this point. I remember making some noise, but I couldn't describe it to you. I remember my wife comforting me. And I remember, as I was in the kitchen, how filthy it was under the fridge was.
This was also the first seizure where I didn't blackout. The whole thing can't have lasted much longer than a minute, but it was exhausting. Like a full-on workout exhausting. I was out of breath. I had also lost feeling and mobility down the entire right-hand side of my body. This made struggling to the sofa an adventure. I managed to drag my half-limp body to the dining room.
I fully recovered a couple of hours later, but I suspect this won't be my last seizure. At least I'm getting used them now.
Tuesday, 4 September 2018
Tuesday, 24 July 2018
Consumer Review: Russell Hobbs Colour Control Ultra 2600W Iron
The RH Colour Control Ultra is a smashing bit of kit.
With its black, purple and chrome finish the iron's beauty is matched only by its well made and sturdy construction. The ceramic non-stick sole plate glides through the most troublesome of wrinkles, giving the best finish on shirts, blouses and even curtains.
But it doesn't end there!
Features include a colour control indicator, that indicates what control level you're on via the medium of colour. For those looking to make a tiny-sauna-on-a-budget there's also a continuous steam option. And for the safety conscious there's an automatic shut off.
The RHCCU also includes 320ml water tank and spray.
All-in-all, a cracking purchase. Thanks Russell Hobbs!
Thank you for indulging me in this exercise to stop myself going completely insane. I will endeavor to occasionally go on a little adventure and report back my findings.
Oh, and I still have a bit of cancer, by the way.
With its black, purple and chrome finish the iron's beauty is matched only by its well made and sturdy construction. The ceramic non-stick sole plate glides through the most troublesome of wrinkles, giving the best finish on shirts, blouses and even curtains.
But it doesn't end there!
Features include a colour control indicator, that indicates what control level you're on via the medium of colour. For those looking to make a tiny-sauna-on-a-budget there's also a continuous steam option. And for the safety conscious there's an automatic shut off.
The RHCCU also includes 320ml water tank and spray.
All-in-all, a cracking purchase. Thanks Russell Hobbs!
***
OK. I'll admit it. I'm bored.
I've not actually used this iron yet, but I expect it gets hot when you plug it in, and makes clothes slightly flatter than they were before.
Thank you for indulging me in this exercise to stop myself going completely insane. I will endeavor to occasionally go on a little adventure and report back my findings.
Oh, and I still have a bit of cancer, by the way.
Thursday, 5 July 2018
Happy Birthday NHS
Eight years ago I was diagnosed with a left frontal astrocytoma, or brain tumor to you and me. The same year I started this blog in order to tell the story on my condition, believing I had something special to say about a special situation. Later I got better and returned to work, and ceased being 'special.' My work on the blog ended.
On 12th June this year I was at home, playing chess with my son, when I had only my third and latest seizure. This was just a few weeks after an MRI scan revealed two new areas of concern, probably tumours. And about 18 months after I first began chemotherapy following a change in the original tumour.
I realise this could be a lot to take in for some of you, and I promise to expand my thoughts on this over the coming days, weeks and months, but I wanted to take this opportunity to say thank you to the NHS.
This is not just coming from a financial perspective, although such a contribution would be worthy. Over the last a few weeks I've tried to tot up much my treatment has cost over the last eight years. From MRI Scans to chemo courses to operations it would have cost tens-of-thousands of pounds. In all honesty I lost count and being a former journalist I don't need to worry about the 'facts' anymore. Either way it's an expense I could not and still can not afford, and to have to face cancer while dealing with such bills would have been unthinkable.
The real reason for me writing this post is to highlight just how personal a service it can be. During a seizure you can usually remember the first few minutes of what's going on. You can't move, but you're conscious of your surroundings. This includes my neighbour stepping over me to take the kids upstairs and my wife talking on the phone to the person trying to keep her calm while they were trying to find out what was going on. The last thing I remember was being annoyed about banging my head against the wall over and over again. You'd have thought someone could havd moved me or put a cusion between my head and the wall. I also thought is this it?
Then I remember coming round in what was probably A&E. I realised my wife was there, while doctors and nurses poked and prodded, and stuck various wires to my arms, legs and chest to check I was still alive. As I was being injected with some wonderful drugs when two paramedics, I'd never met before, came over to see how I was doing. I soon realised that while I had not met them, they had met me. It struck me that despite our short time together (slightly longer from their point of view) they'd come to, in some small way, care about the outcome of this case, of little old me. It's the strangest of feelings introducing yourself to someone long after they've seen you at your worst, and in your greatest moment of need. The cynic in me would say this was their way of getting some kind personal closure, or making sure they'd done the right thing, but I felt there was genuine concern there. A genuine worry of my well being. They had no reason to come back and check on how I was and yet they did.
I'm not silly enough to think I'm special and this a one off from thier point of view. These two paramedics show the type of people who work for the NHS. Having an above and beyond calling to care over what's practically needed. I'd be shocked to be the only one recieving this kind of treatment on their shift that night.
This wasn't the only example of kindness over the 24 hours I was in hospital that day, let alone the last eight years. So I just wanted to say, 'Thanks NHS, and happy birthday.'
On 12th June this year I was at home, playing chess with my son, when I had only my third and latest seizure. This was just a few weeks after an MRI scan revealed two new areas of concern, probably tumours. And about 18 months after I first began chemotherapy following a change in the original tumour.
I realise this could be a lot to take in for some of you, and I promise to expand my thoughts on this over the coming days, weeks and months, but I wanted to take this opportunity to say thank you to the NHS.
This is not just coming from a financial perspective, although such a contribution would be worthy. Over the last a few weeks I've tried to tot up much my treatment has cost over the last eight years. From MRI Scans to chemo courses to operations it would have cost tens-of-thousands of pounds. In all honesty I lost count and being a former journalist I don't need to worry about the 'facts' anymore. Either way it's an expense I could not and still can not afford, and to have to face cancer while dealing with such bills would have been unthinkable.
The real reason for me writing this post is to highlight just how personal a service it can be. During a seizure you can usually remember the first few minutes of what's going on. You can't move, but you're conscious of your surroundings. This includes my neighbour stepping over me to take the kids upstairs and my wife talking on the phone to the person trying to keep her calm while they were trying to find out what was going on. The last thing I remember was being annoyed about banging my head against the wall over and over again. You'd have thought someone could havd moved me or put a cusion between my head and the wall. I also thought is this it?
Then I remember coming round in what was probably A&E. I realised my wife was there, while doctors and nurses poked and prodded, and stuck various wires to my arms, legs and chest to check I was still alive. As I was being injected with some wonderful drugs when two paramedics, I'd never met before, came over to see how I was doing. I soon realised that while I had not met them, they had met me. It struck me that despite our short time together (slightly longer from their point of view) they'd come to, in some small way, care about the outcome of this case, of little old me. It's the strangest of feelings introducing yourself to someone long after they've seen you at your worst, and in your greatest moment of need. The cynic in me would say this was their way of getting some kind personal closure, or making sure they'd done the right thing, but I felt there was genuine concern there. A genuine worry of my well being. They had no reason to come back and check on how I was and yet they did.
I'm not silly enough to think I'm special and this a one off from thier point of view. These two paramedics show the type of people who work for the NHS. Having an above and beyond calling to care over what's practically needed. I'd be shocked to be the only one recieving this kind of treatment on their shift that night.
This wasn't the only example of kindness over the 24 hours I was in hospital that day, let alone the last eight years. So I just wanted to say, 'Thanks NHS, and happy birthday.'
Tuesday, 28 September 2010
Bus Rant v2.0
A man on the bus who sometimes sits next to me smells of pine needles. I imagine he works in a car air freshener factory, or to save money in these thrifty times uses such deodorisers in favour of Right Guard. He also has a folding bike.
Another of my fellow passengers , looks like a rejected Bee Gee; a Gibb brother who didn't make the high pitched vocal grade. He does, however, have the dentures of his pseudo siblings.
There's the drunk who stays on the bus for a single stop. The giggling school girls who, I'm sure, sit texting each other. And the fat kid who tips the bus when he gets on.
That's not to mention the bald guy with the big scar across the top of his head. In case you haven't guessed by now I'm starting to get to know my fellow commuters, not by name, but by the fictitious lives I choose to give them.
I see the same depressed faces, who get on and get off at the same stops, and sit in the same seats. Day in Day out, like a rotisserie, endlessly going round and round until they find something else to do. (I include myself in this description.) I'm convinced they lead perfectly happy lives outside the confines of the bus. Their smiles wiped from their faces as soon as the step on say to the driver, "single to Nuneaton, please." It's as if some unwritten rule is subconsciously ingrained on our brains from birth.
Then there's unattractive factor. No one looks sexy on a bus. (Again, I include myself in the description.) Not even that grumpy bloke from the vampire film can look sexy on public transport. First there's the stagger when the bus is in motion. No one can look good as their thrown from one side of the bus to other, grabbing the hand rails like they were monkey bars. Secondly there's the intimacy issue. It's very rare we get as close as we do as we do on a bus. All crammed in to such a small space. And most of us don't look that good close up. God forbid someone will sit next to me. Avoid eye contact at all costs. Apologise politely for ANY contact at all.
While I'm on the subject of not looking sexy, it is impossible to remove a rucksack, when worn with both straps, with any dignity left in tact. I have opted for such a shoulder hold-all on my commute. In my youth I 'wore' the rucksack over a single shoulder. Now in adulthood I opt for a dual strap approach. This appears to be the way with the youth of today, however, they tend to keep their straps as long as possible. The result being the 'Sack' hangs down just above the rear. While this does give the advantage of being easier to remove the rucksack I will not mimicking my younger fellow commuters, and for two reasons. One: I do not wish to pretend to young and trendy. I wasn't trendy when I was young, and I'm not going to start now. Two: I reckon it'd be bloody annoying. But anyway I digress.
There is something disturbing I have spotted on my journey to work. It is a plastic statuette of an elderly man, with white hair and a moustache. It is outside a hairdressers and I'm guessing the replica being is supposed to a barber. However there's something missing, or rather two things missing. Namely his hands. I can't think of the logic behind the owners of the barbers using such a figurine. It's as if they're trying to say, 'we cut hair as good as someone with no hands.' Either that or just a force of habit and it's something they've done since they opened in 19-blah-de-blah. Some youths with rucksacks hanging round the bum must've stolen the hands years ago. I'm not sure which is worse: a misjudged message or doing something just because that's the way it's always been done.
At least a pun wasn't used in the name of the business.
Other than being a little annoyed on the way to work, I'm feeling fine, by the way.
J
Another of my fellow passengers , looks like a rejected Bee Gee; a Gibb brother who didn't make the high pitched vocal grade. He does, however, have the dentures of his pseudo siblings.
There's the drunk who stays on the bus for a single stop. The giggling school girls who, I'm sure, sit texting each other. And the fat kid who tips the bus when he gets on.
That's not to mention the bald guy with the big scar across the top of his head. In case you haven't guessed by now I'm starting to get to know my fellow commuters, not by name, but by the fictitious lives I choose to give them.
I see the same depressed faces, who get on and get off at the same stops, and sit in the same seats. Day in Day out, like a rotisserie, endlessly going round and round until they find something else to do. (I include myself in this description.) I'm convinced they lead perfectly happy lives outside the confines of the bus. Their smiles wiped from their faces as soon as the step on say to the driver, "single to Nuneaton, please." It's as if some unwritten rule is subconsciously ingrained on our brains from birth.
Then there's unattractive factor. No one looks sexy on a bus. (Again, I include myself in the description.) Not even that grumpy bloke from the vampire film can look sexy on public transport. First there's the stagger when the bus is in motion. No one can look good as their thrown from one side of the bus to other, grabbing the hand rails like they were monkey bars. Secondly there's the intimacy issue. It's very rare we get as close as we do as we do on a bus. All crammed in to such a small space. And most of us don't look that good close up. God forbid someone will sit next to me. Avoid eye contact at all costs. Apologise politely for ANY contact at all.
While I'm on the subject of not looking sexy, it is impossible to remove a rucksack, when worn with both straps, with any dignity left in tact. I have opted for such a shoulder hold-all on my commute. In my youth I 'wore' the rucksack over a single shoulder. Now in adulthood I opt for a dual strap approach. This appears to be the way with the youth of today, however, they tend to keep their straps as long as possible. The result being the 'Sack' hangs down just above the rear. While this does give the advantage of being easier to remove the rucksack I will not mimicking my younger fellow commuters, and for two reasons. One: I do not wish to pretend to young and trendy. I wasn't trendy when I was young, and I'm not going to start now. Two: I reckon it'd be bloody annoying. But anyway I digress.
There is something disturbing I have spotted on my journey to work. It is a plastic statuette of an elderly man, with white hair and a moustache. It is outside a hairdressers and I'm guessing the replica being is supposed to a barber. However there's something missing, or rather two things missing. Namely his hands. I can't think of the logic behind the owners of the barbers using such a figurine. It's as if they're trying to say, 'we cut hair as good as someone with no hands.' Either that or just a force of habit and it's something they've done since they opened in 19-blah-de-blah. Some youths with rucksacks hanging round the bum must've stolen the hands years ago. I'm not sure which is worse: a misjudged message or doing something just because that's the way it's always been done.
At least a pun wasn't used in the name of the business.
Other than being a little annoyed on the way to work, I'm feeling fine, by the way.
J
Thursday, 19 August 2010
"No time for love, Dr. Jones."
First let me just say this will be a practical blog entry, updating you with the latest on my 'none-tumor,' and not the whimsical wallowing of a meandering mind you've all become accustom to over recent weeks.
Alliteration aside I went to see my oncologist yesterday. Or rather my new oncologist. The one I was seeing left and passed my case onto the top dog of all things cancer related at Coventry Hospital. He was over an hour late for the appointment and when he did see me he clearly hadn't read my notes. I'm surprised he knew my name. It meant having to go through the whole story of the second fit, and blood tests, and more steroids and blah, blah, blah. All over again.
He shined a torch in my eyes, got me to wave my arms around a bit and do the Times crossword. The usual stuff to check for brain tumors. I'm now, according to the blood test, on enough drugs to stop me having another fit. Which means I can come off the steroids. Again. Of course I have to be weened off them, dropping 1mg every three days. I should be off them by the end of the first week in September. If all goes according to plan.
That's about all I can report from that meeting. I'll be seeing him again in three months time. With an MIR scan in six months. The whole appointment lasted no more than ten minutes.
And then, today, I met my with my surgeon to discuss my latest MIR scan. Which I'm not having until next week. Yes, another administrative folly has led to me having a doctors appointment before the actual scan that the doctors appointment was set up for. Still, he said I looked well. And he did some more lights in the eyes and waving my arms around business. I think to just to make me feel like the whole trip was worth while. So I'll be have my scan next week as planned and he'll call me if there's any problems. And that should be the last I'll hear from him.
So that's us up date pretty much. I'll let you know how the scan goes next week. My first week back at work full time as well. So back to the whimsical wallowing of the meandering mind.
J
Alliteration aside I went to see my oncologist yesterday. Or rather my new oncologist. The one I was seeing left and passed my case onto the top dog of all things cancer related at Coventry Hospital. He was over an hour late for the appointment and when he did see me he clearly hadn't read my notes. I'm surprised he knew my name. It meant having to go through the whole story of the second fit, and blood tests, and more steroids and blah, blah, blah. All over again.
He shined a torch in my eyes, got me to wave my arms around a bit and do the Times crossword. The usual stuff to check for brain tumors. I'm now, according to the blood test, on enough drugs to stop me having another fit. Which means I can come off the steroids. Again. Of course I have to be weened off them, dropping 1mg every three days. I should be off them by the end of the first week in September. If all goes according to plan.
That's about all I can report from that meeting. I'll be seeing him again in three months time. With an MIR scan in six months. The whole appointment lasted no more than ten minutes.
And then, today, I met my with my surgeon to discuss my latest MIR scan. Which I'm not having until next week. Yes, another administrative folly has led to me having a doctors appointment before the actual scan that the doctors appointment was set up for. Still, he said I looked well. And he did some more lights in the eyes and waving my arms around business. I think to just to make me feel like the whole trip was worth while. So I'll be have my scan next week as planned and he'll call me if there's any problems. And that should be the last I'll hear from him.
So that's us up date pretty much. I'll let you know how the scan goes next week. My first week back at work full time as well. So back to the whimsical wallowing of the meandering mind.
J
Monday, 16 August 2010
Because I'm Worth It
It appears my hair is growing back.
Now don't get too excited. It may be some time before my luscious locks return to their Samson like powers, but there is hair there where there wasn't before. It's still patchy and I'm going to have to stop shaving it for a while just to see exactly where it's coming back. Some of it looks a little finer than before, if that's possible. So I may still need to keep shaving it. My plan is to grow it out for the next week and see what it looks like. I shall post some photos. No matter how ridiculous I look.
In other news I may actually have some other news by the end of the week. I've got two doctors appointments this week. One with my oncologist and one with my surgeon. I should get my blood results back, meaning they can put me on the correct dosage of the anti-fitting drug. And more importantly can start coming off the steroids. Again. Other than that I don't think there's a lot else they can tell me. My next MIR scan's due next week, so it's going to be the appointment after that which will be more telling. I'll let you know how I get on.
Until then.
J
Now don't get too excited. It may be some time before my luscious locks return to their Samson like powers, but there is hair there where there wasn't before. It's still patchy and I'm going to have to stop shaving it for a while just to see exactly where it's coming back. Some of it looks a little finer than before, if that's possible. So I may still need to keep shaving it. My plan is to grow it out for the next week and see what it looks like. I shall post some photos. No matter how ridiculous I look.
In other news I may actually have some other news by the end of the week. I've got two doctors appointments this week. One with my oncologist and one with my surgeon. I should get my blood results back, meaning they can put me on the correct dosage of the anti-fitting drug. And more importantly can start coming off the steroids. Again. Other than that I don't think there's a lot else they can tell me. My next MIR scan's due next week, so it's going to be the appointment after that which will be more telling. I'll let you know how I get on.
Until then.
J
Wednesday, 4 August 2010
Normality
Not a lot is happening. Work is going fine. Three days a week now. Still cleaning, cooking and ironing my way out of boredom for the other two days. Everything appears to be getting back to normality. And that's becoming a bit of a problem.
Now this is going to sound stunningly perverse, but I'm starting to miss the drama of the last seven months. If you'd have asked me back in February if I'd have liked a brain tumor I would of course said 'no,' but in a weird way, and now I'm not in any immediate danger, I do miss being miss being centre of attention. As I write this I realise how ridiculous it sounds, but imagine every time you spoke to someone the first subject of conversation is about you. It's a massive ego boost.
I'm convinced we're all secret ego-maniacs. Selfish and self centred. It's just some of us are better at hiding it than others. Just look at Facebook and Twitter. How arrogant is it to assume that we need to know what you're doing at any one time. (He says writing a blog.) Yet millions of us do it and millions read them. Be honest. When was the last time you posted something witty or interesting and you sat waiting for a response. And when you don't get a response after ten minutes you're disappointed. Or is it just me? Rest assured I'll be waiting for a response to this blog, so if you could at acknowledge it's existence that would be great. Begging for recognition. Pathetic.
Obviously I don't want to have the cancer back. I fear it wouldn't have the same impact the second time around, and it could kill me, which would defeat the object. So I need something else. There's my job, which is something of an ego boost. Speaking to literally tens of people every hour, telling them what's going on in the 'Oak FM area.' But that's the problem. I'm not talking about me. So what then?
I've already said I'm not, faced with the very clear signpost of my own mortality, going to do parachute jump, or climb a big mountain, or run a marathon. That would require some kind of effort and/or bravery. But I don't want to slip back into normality either. So I guess I need something that requires very little effort and no nerve. But makes me important, the centre of attention and gives me buckets of standing-out-from-the-crowdness.
Any ideas?
J
Now this is going to sound stunningly perverse, but I'm starting to miss the drama of the last seven months. If you'd have asked me back in February if I'd have liked a brain tumor I would of course said 'no,' but in a weird way, and now I'm not in any immediate danger, I do miss being miss being centre of attention. As I write this I realise how ridiculous it sounds, but imagine every time you spoke to someone the first subject of conversation is about you. It's a massive ego boost.
I'm convinced we're all secret ego-maniacs. Selfish and self centred. It's just some of us are better at hiding it than others. Just look at Facebook and Twitter. How arrogant is it to assume that we need to know what you're doing at any one time. (He says writing a blog.) Yet millions of us do it and millions read them. Be honest. When was the last time you posted something witty or interesting and you sat waiting for a response. And when you don't get a response after ten minutes you're disappointed. Or is it just me? Rest assured I'll be waiting for a response to this blog, so if you could at acknowledge it's existence that would be great. Begging for recognition. Pathetic.
Obviously I don't want to have the cancer back. I fear it wouldn't have the same impact the second time around, and it could kill me, which would defeat the object. So I need something else. There's my job, which is something of an ego boost. Speaking to literally tens of people every hour, telling them what's going on in the 'Oak FM area.' But that's the problem. I'm not talking about me. So what then?
I've already said I'm not, faced with the very clear signpost of my own mortality, going to do parachute jump, or climb a big mountain, or run a marathon. That would require some kind of effort and/or bravery. But I don't want to slip back into normality either. So I guess I need something that requires very little effort and no nerve. But makes me important, the centre of attention and gives me buckets of standing-out-from-the-crowdness.
Any ideas?
J
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