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
Tuesday, 28 September 2010
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
Wednesday, 21 July 2010
Jobs Worth (pun intended)
Yesterday, for the first time in over seven months, I went to work. I suppose the best way to describe it was unnerving. Seven months is a long time not to do something, and I wasn't sure I knew exactly if I could do it. This may sound ridiculous, but it was a concern. Everything from the computer systems to the phone systems to the studios, on first sight, felt alien. But then something miraculous happened. I just started to use them and instinct took over. If you'd have asked me how use the computer I would've stared at you blankly as a driblet of clear drool fell from my chin. Ask me to actually do it and, autopilot on, Johnny Five. When prompted I even remembered phone numbers. That's the technical side out of the way. Now for the aesthetics.
Believe it or not there is an art to writing news for radio. For those not in the 'biz' it is a skill, if I do say so myself, like essay writing, poetry or prose. At one point, seven months ago, I did, in my own opinion, think I could do it quite well. Since February the only things I've written are shopping lists and this blog. Art forms in themselves. So to sit down at a computer, with a blank screen in front on me, was a little daunting. I needn't have worried. Like the technology it all came back to me and, while it may not have been radio gold, it was acceptable. Confidence regained.
Through this whole process I did have to concentrate a little harder. The drugs were making things a little fuzzy. The day actually got easier as the steroid haze began to lift. It was through this process that I came to a revelation. What I do for a living is quite ridiculous. At best I take information that I think is important, process it and present it in a way that, hopefully, is interesting and easy to understand. At worst I re-write press releases in, hopefully, in an interesting and easy to understand way. I'm not saving lives. I'm not really helping anybody in any way. My whole career has little or no impact on anyone else's existence. What I do for a living is essentially worthless. And yet I love it.
The profession of 'journalist' comes with a certain status, good or bad. I do have a certain pride when asked what I do. My response is often met with at least a vague interest, whether it's genuine isn't really important. The fact that the respondent deems it necessary to at least appear interested demonstrates the esteem to which the profession is aligned. I realise this is a shallow reason, but if I'm honest it's near the top of the list of why I'm still doing it. Maybe I'm being a little too cynical. Very occasionally we do make a difference, even if it's just making someone smile.
Of course there are other reasons as well, that are more obvious, but I won't be going into any detail here. What I wanted to get across is that I won't be going off to save some endangered species in the Amazon. Frankly I'm too selfish. I'll be a journalist until I find something that is as or more impressive to people at the school reunion.
Homework for this week: What value to you put on your job? What impact does it have on others? It doesn't really matter. Just love what you do.
J
Believe it or not there is an art to writing news for radio. For those not in the 'biz' it is a skill, if I do say so myself, like essay writing, poetry or prose. At one point, seven months ago, I did, in my own opinion, think I could do it quite well. Since February the only things I've written are shopping lists and this blog. Art forms in themselves. So to sit down at a computer, with a blank screen in front on me, was a little daunting. I needn't have worried. Like the technology it all came back to me and, while it may not have been radio gold, it was acceptable. Confidence regained.
Through this whole process I did have to concentrate a little harder. The drugs were making things a little fuzzy. The day actually got easier as the steroid haze began to lift. It was through this process that I came to a revelation. What I do for a living is quite ridiculous. At best I take information that I think is important, process it and present it in a way that, hopefully, is interesting and easy to understand. At worst I re-write press releases in, hopefully, in an interesting and easy to understand way. I'm not saving lives. I'm not really helping anybody in any way. My whole career has little or no impact on anyone else's existence. What I do for a living is essentially worthless. And yet I love it.
The profession of 'journalist' comes with a certain status, good or bad. I do have a certain pride when asked what I do. My response is often met with at least a vague interest, whether it's genuine isn't really important. The fact that the respondent deems it necessary to at least appear interested demonstrates the esteem to which the profession is aligned. I realise this is a shallow reason, but if I'm honest it's near the top of the list of why I'm still doing it. Maybe I'm being a little too cynical. Very occasionally we do make a difference, even if it's just making someone smile.
Of course there are other reasons as well, that are more obvious, but I won't be going into any detail here. What I wanted to get across is that I won't be going off to save some endangered species in the Amazon. Frankly I'm too selfish. I'll be a journalist until I find something that is as or more impressive to people at the school reunion.
Homework for this week: What value to you put on your job? What impact does it have on others? It doesn't really matter. Just love what you do.
J
Friday, 16 July 2010
Clipped Wings
Having seen my oncologist yesterday there is both good and bad news. Having said that the good news is very good, and the bad news isn't that bad.
The Good News: There's nothing to worry about following my latest 'relapse.' The doctor's happy the seizure was the result of not being on enough drugs and coming off the steroids too soon. Either I had mild infection causing more swelling and/or the radiotherapy was still doing its stuff. If I have another seizure, say in a couple of months time, then I can start worrying. Now it's all about getting the anti-fitting medication right. My bloods were taken yesterday and will be tested for levels of Tegratol. Based on those levels the dosage will be adjusted accordingly. Then I can start coming off the steroids. Again.
The Bad News: I won't be getting behind the wheel of car this side of summer 2011. This is not because of my latest seizure but a case of misinformation. I was originally told I could drive six months after the operation, which would've been sometime in September. Now I'm told it's 12 months after treatment ends, which would be June/July next year. This does cause a few practical problems.
Now if you put the two in perspective one clearly outweighs the other, but it does clearly demonstrate a continuing theme. While the treatment may be first class, the administering of it isn't. I've already spoken about the unnecessary MIR scans, the wrong dosage of drugs and now this. Yesterday I was angry. Today I've got some perspective. So if you see me thumbing for a lift please stop. I may be bald with a big scar down my head, but I'm not a serial killer. Honest.
I shall stand down from my soap box now, thank the doctors who saved my life, and stop whinging about when they get a bit a paperwork wrong.
J
The Good News: There's nothing to worry about following my latest 'relapse.' The doctor's happy the seizure was the result of not being on enough drugs and coming off the steroids too soon. Either I had mild infection causing more swelling and/or the radiotherapy was still doing its stuff. If I have another seizure, say in a couple of months time, then I can start worrying. Now it's all about getting the anti-fitting medication right. My bloods were taken yesterday and will be tested for levels of Tegratol. Based on those levels the dosage will be adjusted accordingly. Then I can start coming off the steroids. Again.
The Bad News: I won't be getting behind the wheel of car this side of summer 2011. This is not because of my latest seizure but a case of misinformation. I was originally told I could drive six months after the operation, which would've been sometime in September. Now I'm told it's 12 months after treatment ends, which would be June/July next year. This does cause a few practical problems.
Now if you put the two in perspective one clearly outweighs the other, but it does clearly demonstrate a continuing theme. While the treatment may be first class, the administering of it isn't. I've already spoken about the unnecessary MIR scans, the wrong dosage of drugs and now this. Yesterday I was angry. Today I've got some perspective. So if you see me thumbing for a lift please stop. I may be bald with a big scar down my head, but I'm not a serial killer. Honest.
I shall stand down from my soap box now, thank the doctors who saved my life, and stop whinging about when they get a bit a paperwork wrong.
J
Monday, 12 July 2010
Stalled
My return to glory has been delayed once again. But only by another week. Following my seizure last week, and the revelation I wasn't on enough drugs, they've now put me back on steroids. After a week of adjusting to the new dose of anti-fitting drug I found there was still a vague, tiny, minute weakness, a kind of fuzziness down my right hand side. This implied one of two things: either I came off the steroids to soon and radiotherapy was still doing its stuff, or I had some kind of infection.
So on Saturday I went back to hospital, just to get checked out, before they put me back what I believe they refer to on the street as the 'roids.' Actually I just made that up as something to pass the time. For that's all I can do for the next week. The doctor suggested I stay off work for a few days more just for the drugs resettle in.
And so that's the latest. I'll be seeing the oncologist on Thursday. I'll let you know how I get on. And then I'll be returning to work next week. Hopefully.
J
So on Saturday I went back to hospital, just to get checked out, before they put me back what I believe they refer to on the street as the 'roids.' Actually I just made that up as something to pass the time. For that's all I can do for the next week. The doctor suggested I stay off work for a few days more just for the drugs resettle in.
And so that's the latest. I'll be seeing the oncologist on Thursday. I'll let you know how I get on. And then I'll be returning to work next week. Hopefully.
J
Tuesday, 6 July 2010
Blog: Additional
I am home now, and it appears I wasn't on enough drugs. Yesterday's episode may have been the culmination on a number of things, the top of the tree being the prescribed medication should have been doubled from the operation. That, with the booze and virus, was what led to me having another fit.
It took them another 24 hours and a handful of doctors, many I hadn't seen before, to find the cause but at least they found it now. They'll be more on this later in coming days.
Just to let you all know I'm well and happy until I return work next week.
J
It took them another 24 hours and a handful of doctors, many I hadn't seen before, to find the cause but at least they found it now. They'll be more on this later in coming days.
Just to let you all know I'm well and happy until I return work next week.
J
It all seemed to be going well
I think I can quite honestly use the word fuck. I should be writing to you now from my place of work, quipping about being back. Instead I'm sending it from the hospital that some of you will remember from my previous messages. Yesterday I had another fit.
Now don't panic. This isn't going to be like the time before. The tumor has been removed. And that's part of the problem. If there's no tumor there, so what's putting on the pressure?
Three things have changed over the last week: I came off the steroids; I started drinking a little whine; I came out in a rash. Now I'm not gonna speculate on the steroids, but I will on the other two. Let's first put a 'little whine' into context. One glass a day of half red whine half water for the three nights in a row. The following day, after my first glass, I developed a rash. I assumed this was to do with getting too much sun, but could it an allergic reaction to the booze? So now I'm just waiting for answers and another scan.
This could be a problem for driving. If I don't know what's causing the seizures, I don't know when they're going to come. And if the DVLA don't know either then it's anyone's guess as to when I'll get my license back. I don't suppose I would let me get behind a wheel at the moment.
So what happens when you have a fit? In my case it starts in my right foot with small twitch. Then spreads up the leg until you arms are flailing about for thirty seconds. And then everything stops. I started coming back round about an hour later, but wasn't fully conscious for another couple. During that period I knew what was happening and where I was, but I just wanted to sleep. I dozed through about an hour of Murder She Wrote before I called Anisa.
Here I am in hospital, waiting for a scan before I can go home.
Will update you with what I know when I know it.
J
Now don't panic. This isn't going to be like the time before. The tumor has been removed. And that's part of the problem. If there's no tumor there, so what's putting on the pressure?
Three things have changed over the last week: I came off the steroids; I started drinking a little whine; I came out in a rash. Now I'm not gonna speculate on the steroids, but I will on the other two. Let's first put a 'little whine' into context. One glass a day of half red whine half water for the three nights in a row. The following day, after my first glass, I developed a rash. I assumed this was to do with getting too much sun, but could it an allergic reaction to the booze? So now I'm just waiting for answers and another scan.
This could be a problem for driving. If I don't know what's causing the seizures, I don't know when they're going to come. And if the DVLA don't know either then it's anyone's guess as to when I'll get my license back. I don't suppose I would let me get behind a wheel at the moment.
So what happens when you have a fit? In my case it starts in my right foot with small twitch. Then spreads up the leg until you arms are flailing about for thirty seconds. And then everything stops. I started coming back round about an hour later, but wasn't fully conscious for another couple. During that period I knew what was happening and where I was, but I just wanted to sleep. I dozed through about an hour of Murder She Wrote before I called Anisa.
Here I am in hospital, waiting for a scan before I can go home.
Will update you with what I know when I know it.
J
Thursday, 1 July 2010
Another tentative baby-step toward normality
My, it has been a while, but then little has been happening brain tumor-wise since last we spoke. If you miss these little chats, my 'wisdom' is available in bite size chunks on Twitter. Come follow me: twitter.com/mrjwall
I've been to Bradford to see friends and relatives to thank them for their support and well wishing in person. It's a bit like Facebook but in 3D. There are others, I know, but I'll get around to you all eventually. And if I don't, feel free to shout at me or disown me.
Today is my first full day of being steroid free. I'm not sure if you can have a single steroid or it's simply just steroids. Is there a doctor or pharmacist in the house? Anyways, I've been reducing them by 500 micrograms every five days since the radiotherapy ended, and yesterday I took my last Dexamethazone. I've also stopped taking the Omeprozole as well. That was protecting my stomach from the steroids. So far so good. No headaches. I have been a little tired, but that's probably more to do with the shopping trip to tropical Leicester and the all-you-can-eat Chinese buffet lunch.
Which brings me to my next subject. Removing the steroids from my system also removes my excuse for not losing any weight. It's true I have been blaming the drugs for being a little tubby when in fact it's probably more to do with eating too much of the wrong thing and not getting any exercise. I hear-by pledge to get into shape. What shape I'm not quite sure yet, but as long as I'm a little lighter, I'm not bothered. I think I'll try some swimming first. I'll let you know how I get on, but if you catch me eating cake smack it of hand and say, "For the love of god man. Have you no shame?"
There's no sign of the hair growing back. Yet. I am becoming an expert in shaving my head. I could almost do it blindfolded if it weren't for the blindfold getting in the way. As it is it's mostly around the back of my head and have to go by touch. Please don't check to see if I've missed a bit. There's a good chance I'll doing it again the following day anyway. Fingers crossed it'll grow back soon, although I am getting used to the new look.
Tune in next week when I return to the wonderful world of work. It's my bit to help reduce the budget deficit.
J
I've been to Bradford to see friends and relatives to thank them for their support and well wishing in person. It's a bit like Facebook but in 3D. There are others, I know, but I'll get around to you all eventually. And if I don't, feel free to shout at me or disown me.
Today is my first full day of being steroid free. I'm not sure if you can have a single steroid or it's simply just steroids. Is there a doctor or pharmacist in the house? Anyways, I've been reducing them by 500 micrograms every five days since the radiotherapy ended, and yesterday I took my last Dexamethazone. I've also stopped taking the Omeprozole as well. That was protecting my stomach from the steroids. So far so good. No headaches. I have been a little tired, but that's probably more to do with the shopping trip to tropical Leicester and the all-you-can-eat Chinese buffet lunch.
Which brings me to my next subject. Removing the steroids from my system also removes my excuse for not losing any weight. It's true I have been blaming the drugs for being a little tubby when in fact it's probably more to do with eating too much of the wrong thing and not getting any exercise. I hear-by pledge to get into shape. What shape I'm not quite sure yet, but as long as I'm a little lighter, I'm not bothered. I think I'll try some swimming first. I'll let you know how I get on, but if you catch me eating cake smack it of hand and say, "For the love of god man. Have you no shame?"
There's no sign of the hair growing back. Yet. I am becoming an expert in shaving my head. I could almost do it blindfolded if it weren't for the blindfold getting in the way. As it is it's mostly around the back of my head and have to go by touch. Please don't check to see if I've missed a bit. There's a good chance I'll doing it again the following day anyway. Fingers crossed it'll grow back soon, although I am getting used to the new look.
Tune in next week when I return to the wonderful world of work. It's my bit to help reduce the budget deficit.
J
Tuesday, 15 June 2010
Radiotherapy: Day Thirty
So that's that then. My final radiotherapy session has taken place today. If all has gone well I should now be cancer free, and things can start getting back to normal. I met with the oncologist last week and she said the treatment, once again, could not have gone better. Other than my hair falling out I still haven't suffered any side effects. I could get some over the next couple of weeks though. On the drugs front from tomorrow I'll begin the gradual reduction of the steroids and should be off them by the end of the month. I'll still have to take the anti-convulsive, and could be on that for the rest of my life. But it's just one tablet a day with no side effects.
And yes they let me keep the mask.
No, it's not a gimp mask. For those of you who don't know this was used in every one of my radiotherapy sessions. I'd lie down, this would be put on my head and clipped to the bench to make sure the magic beams hit the same spot every day. It looks worse than it is. At least I didn't get a cold through the treatment. You can only breathe through your nose while wearing it. I shall be terrorising my son with it later.
So, what happens now? I'll be getting another scan in about six to eight weeks to see what's going on in my head. That's when I could get the all clear. I'll then get scanned every six months or so, just to make sure nothing else is growing there. I've also got an appointment with the surgeon at the end of July, just to see how I'm getting on following the operation.
As regards to work I should be returning the first full week in July, just for two days a week to start with and gradually building up to full time. I will have to brave public transport once again as I don't get my driving license back until at least September. It's all a step closer to getting back to normality.
I'm going back to Bradford next week, So if any one's in the area and wants to bring me cake in person you can book an appointment via the comments section below, or by the usual methods.
Another metaphorical hurdle jumped clean.
J
And yes they let me keep the mask.
No, it's not a gimp mask. For those of you who don't know this was used in every one of my radiotherapy sessions. I'd lie down, this would be put on my head and clipped to the bench to make sure the magic beams hit the same spot every day. It looks worse than it is. At least I didn't get a cold through the treatment. You can only breathe through your nose while wearing it. I shall be terrorising my son with it later.
So, what happens now? I'll be getting another scan in about six to eight weeks to see what's going on in my head. That's when I could get the all clear. I'll then get scanned every six months or so, just to make sure nothing else is growing there. I've also got an appointment with the surgeon at the end of July, just to see how I'm getting on following the operation.
As regards to work I should be returning the first full week in July, just for two days a week to start with and gradually building up to full time. I will have to brave public transport once again as I don't get my driving license back until at least September. It's all a step closer to getting back to normality.
I'm going back to Bradford next week, So if any one's in the area and wants to bring me cake in person you can book an appointment via the comments section below, or by the usual methods.
Another metaphorical hurdle jumped clean.
J
Tuesday, 8 June 2010
James Wall's Back
Why is you get a little brain tumor you get all the sympathy in world, but fall off a ladder and do some real damage and all you get is "serves you right"? Yesterday I had two trips to the hospital: one for treatment for the former, while the second was to get checked out for the latter. I was going up in the loft to get some bags of Jack's old clothes when the ladder disappeared from under me. I landed on my bum. The clothes landed on my head. At least I wasn't getting an Acme Anvil down from the loft. As a result I now have a dodgy back which is slowly getting better. No real damage done.
Here I must protest. While I have received many well-wishings in regards to my tumor, thanks for which have already been given on these here pages, the ladder 'incident' has sparked a less than sympathetic response. While I realise one is more serious than the other, falling from about a grand height of about four feet and landing on your ass hurts a damn sight more. And yet the kind of responses I've had include "What were you doing up a ladder?" I resisted the obvious response, "Trying to get to an area that was higher than I could not physically reach."
It's not like I wasn't misusing the ladders. They were properly set up in the proper manor and I wasn't stood at the top of them on one leg juggling chainsaws. It's the same thing with DIYers. No matter how many fingers they lose there's almost a 'serves them right' attitude. Well no more. I have 'suffered' serious illness and not-so-serious injury, and I demand equality. Our attitudes toward injury sustained through misadventure should no longer be dismissed as mere folly. I trust you'll now see my ladder related injuries on par with my brain cancer.
Amen.
Tomorrow I'm trimming the hedge. Wish me luck.
J
Here I must protest. While I have received many well-wishings in regards to my tumor, thanks for which have already been given on these here pages, the ladder 'incident' has sparked a less than sympathetic response. While I realise one is more serious than the other, falling from about a grand height of about four feet and landing on your ass hurts a damn sight more. And yet the kind of responses I've had include "What were you doing up a ladder?" I resisted the obvious response, "Trying to get to an area that was higher than I could not physically reach."
It's not like I wasn't misusing the ladders. They were properly set up in the proper manor and I wasn't stood at the top of them on one leg juggling chainsaws. It's the same thing with DIYers. No matter how many fingers they lose there's almost a 'serves them right' attitude. Well no more. I have 'suffered' serious illness and not-so-serious injury, and I demand equality. Our attitudes toward injury sustained through misadventure should no longer be dismissed as mere folly. I trust you'll now see my ladder related injuries on par with my brain cancer.
Amen.
Tomorrow I'm trimming the hedge. Wish me luck.
J
Tuesday, 1 June 2010
Radiotherapy: Day Twenty
I'm two-thirds of the way through my treatment and still going strong, or at least as strong as when I began this wonderful adventure. As a special bonus I also had another MIR scan today, something which may prove to be pointless. I shall explain. Radiotherapy causes swelling, which is why I'm still on the steroids. Any swelling would hide any possible cancerous cells, thus negating the purpose of the scan. So why did it go ahead? Well, I told the radiotherapist my concerns last week. She said it was booked by the neurosurgeon, and that it wasn't their decision to make. So, not only are they wasting my time, but, and without wanting to sound like the Daily Mail, also wasting tax payer's money. I'll let you know what happens when I get the almost useless results.
I should also win the 'avoiding a sarcastic answer to an obvious question' of the week competition. Before any MIR scan you have to complete a short survey just to make sure you haven't got any metal on you or in you. One of the questions I was asked was 'Have you ever had any operations on your head?' Now, the answer I wanted to give was, 'No. The reason I have no hair and there's a line down the middle of my skull is because I have an arse for a head.' I managed to restrained myself. To be fair the woman was looking at the survey and not my head, but it does look like an arse.
I've had that many MIR scans I almost fell asleep in this one. That may surprise anyone who's had one. For anyone who hasn't you're crammed inside a very small hole and while the machine makes a very loud noise. You'd have thought boffins could've come up with a way of scanning bits of the body with making such a racket. Personally I think its so noisy just to make it sound more expensive and impressive. Anyway, for these reasons most people don't find it a relaxing experience. I'd just been for radiotherapy where you lay on hard bench. The MIR scanner is equipped with a cushioned bench. So, comparatively, it was much more comfortable. I was almost annoyed when the pulled me out. We shall await the results.
Until next time...
J
I should also win the 'avoiding a sarcastic answer to an obvious question' of the week competition. Before any MIR scan you have to complete a short survey just to make sure you haven't got any metal on you or in you. One of the questions I was asked was 'Have you ever had any operations on your head?' Now, the answer I wanted to give was, 'No. The reason I have no hair and there's a line down the middle of my skull is because I have an arse for a head.' I managed to restrained myself. To be fair the woman was looking at the survey and not my head, but it does look like an arse.
I've had that many MIR scans I almost fell asleep in this one. That may surprise anyone who's had one. For anyone who hasn't you're crammed inside a very small hole and while the machine makes a very loud noise. You'd have thought boffins could've come up with a way of scanning bits of the body with making such a racket. Personally I think its so noisy just to make it sound more expensive and impressive. Anyway, for these reasons most people don't find it a relaxing experience. I'd just been for radiotherapy where you lay on hard bench. The MIR scanner is equipped with a cushioned bench. So, comparatively, it was much more comfortable. I was almost annoyed when the pulled me out. We shall await the results.
Until next time...
J
Tuesday, 25 May 2010
Radiotherapy: Day Sixteen
I'm past the halfway point and am getting very bald. In the last week I've lost most of my hair. What's left has been shaved down to mere stubble. I can honestly say, while it doesn't look great, it doesn't really bother me either. While I have no problem with going bald, it does look a bit odd. My hairline looks like it's from a future me, while my face still enjoys the youthful looks of someone in their early 30s. My second chin still looks the same. You can have look here:
So what to do? I can either grow what's left and pretend nothing has happened, or do I go the full 'Duncan Goodhew?' I'm edging towards the latter. At least I have some control and can say it's a lifestyle choice. The only problem with that is I consider shaving my face enough of a faff as it is. Perhaps I should simply grow a beard. That would not only keep my daily shaving time to the same as it is now, but I would also have the same amount of hair, just in a different place. The options are almost endless, but I would appreciate your input.
Other than the hair loss I'm not feeling any other symptoms. No tiredness or nausea. That could possibly be a treat for the last couple of weeks. As usual I'll keep you up to date.
J
So what to do? I can either grow what's left and pretend nothing has happened, or do I go the full 'Duncan Goodhew?' I'm edging towards the latter. At least I have some control and can say it's a lifestyle choice. The only problem with that is I consider shaving my face enough of a faff as it is. Perhaps I should simply grow a beard. That would not only keep my daily shaving time to the same as it is now, but I would also have the same amount of hair, just in a different place. The options are almost endless, but I would appreciate your input.
Other than the hair loss I'm not feeling any other symptoms. No tiredness or nausea. That could possibly be a treat for the last couple of weeks. As usual I'll keep you up to date.
J
Thursday, 20 May 2010
Radiotherapy: Day Thirteen
So, the hair has finally begun to fall out. And it's a lot more than I was led to believe! Still it's not like I had good hair in the first place, and it does mean I get to wear those hats that only cancer patients can get away with. I've had my eye on an Indiana Jones style fedora for sometime now. In my head it would turn me into Harrison Ford. In reality I would still be me, but wearing a silly hat.
Perhaps I should buy a series of hats, take some photos and you can vote for which one I should wear. That may be a little bit too Saturday night telly for my liking. It might just be easier to wear a simple cap. That would fit in more with the clientelle of my bus journey to and from hospital every day. Lots of fat people in track suites, an irony I'm still enjoying. That's something else you can do as a cancer patient, say whatever's on your mind. I have considered sitting on bus simply pulling out chunks of hair. Just to freak people out. But I seriously don't think anyone would notice. I'll stick with cap for now, but if want to send your suggestions please do.
I'll try and get some photos taken of the bald patch before Anisa just shaves it all off.
The hair loss is the first side effect of the treatment I've experienced. I'm still feeling fine in myself. On Monday I helped move two tonnes of top soil before my treatment. And when I say helped I moved half of it myself. This is an illustratative example of how well I feel, and not just me showing off. Although I did feel like a proper man. I now have a vegetable patch thanks to my dad, but that's for another blog.
Just a quick mention for my son Jack, who keeps us entertained, and celebrates his 18 month birthday type thing. A milestone for us all.
J
Perhaps I should buy a series of hats, take some photos and you can vote for which one I should wear. That may be a little bit too Saturday night telly for my liking. It might just be easier to wear a simple cap. That would fit in more with the clientelle of my bus journey to and from hospital every day. Lots of fat people in track suites, an irony I'm still enjoying. That's something else you can do as a cancer patient, say whatever's on your mind. I have considered sitting on bus simply pulling out chunks of hair. Just to freak people out. But I seriously don't think anyone would notice. I'll stick with cap for now, but if want to send your suggestions please do.
I'll try and get some photos taken of the bald patch before Anisa just shaves it all off.
The hair loss is the first side effect of the treatment I've experienced. I'm still feeling fine in myself. On Monday I helped move two tonnes of top soil before my treatment. And when I say helped I moved half of it myself. This is an illustratative example of how well I feel, and not just me showing off. Although I did feel like a proper man. I now have a vegetable patch thanks to my dad, but that's for another blog.
Just a quick mention for my son Jack, who keeps us entertained, and celebrates his 18 month birthday type thing. A milestone for us all.
J
Monday, 10 May 2010
Radiotherapy: Day Five
I've just had my fifth treatment, and still no side-effects. Nor no superpowers, not even a psychic vision of the future. As predicted the bus journey is more of a pain, but I'm getting used to it. An Ipod and a book pass the time. You tend to see the same people, making the same journeys everyday. They all seem to know each other. I can already predict who gets on and off at which stops. I'm sure they're all thinking the same about me, only I'm the one with big scar on my head.
I forget it's there sometimes. It's never really been an issue considering what I've had done, but now I'm out of immediate danger it is starting to bug me a little. My hair's growing at an accelerated rate due to the steroids. I'm not sure if it's going to cover up the damage though. I've still not had an hair loss from the radiotherapy either. As I've said before it's a small price to pay, and it's not like I ever had great hair anyway.
Sorry it's not been too exciting, but that's how things are at the moment. Routine and repetition. Keeping appointments like clockwork. I'm sure it's the same for all of you. Only I have my next month planned out for me on a sheet of paper stuck to the fridge.
Oh well, only 25 more to go.
J
I forget it's there sometimes. It's never really been an issue considering what I've had done, but now I'm out of immediate danger it is starting to bug me a little. My hair's growing at an accelerated rate due to the steroids. I'm not sure if it's going to cover up the damage though. I've still not had an hair loss from the radiotherapy either. As I've said before it's a small price to pay, and it's not like I ever had great hair anyway.
Sorry it's not been too exciting, but that's how things are at the moment. Routine and repetition. Keeping appointments like clockwork. I'm sure it's the same for all of you. Only I have my next month planned out for me on a sheet of paper stuck to the fridge.
Oh well, only 25 more to go.
J
Tuesday, 4 May 2010
Radiotherapy: Day One
I began my six week course of radiotherapy today, and there's little to report. The whole process took about ten minutes and I didn't feel a thing. The area around where the tumor was was zapped five times from different angles, and that was that. I came out feeling the same as I went in. With the exception of weekends this will be repeated up to and including June 16th. As I've said before the side effects, if they come at all, will come later in the treatment. These include tiredness, nausea and some hair loss where the 'lasers' go through my head.
At the moment the real pain's going to be getting to the hospital. Today I was driven. Tomorrow I embark on the adventure called 'public transport.' Now, I don't want to come off sounding like a snob, but I haven't been on a bus in years, and for one good reason: they're simply not convenient. Tomorrow I will be getting one of three buses. The better option will get me there 30 minutes before my treatment begins and leaves 30 minutes after it ends. That's an hour's wait each day. They'll be about a week where I'm not getting the bus, so give a take an hour I've wasted about a day of my life. All because of public transport. Now I'm just winging, but hey that's what the internet's for. A full report will be available tomorrow.
I went to see the man responsible for removing my tumor in the first place last week. The surgeon said my scar's healing well and booked me in for another MIR scan. I haven't got a date yet, but I'll let you all know. There's some positive news on glass of wine front. He didn't say I couldn't have one. What he did say was that alcohol would inhibit the drugs that I'm on, and that could lead to me having another fit. But it was my decision and that he couldn't tell me what to do. I'll at least wait until the end of the radiotherapy before I give into temptation.
I'll give you a bus review tomorrow. Until then...
At the moment the real pain's going to be getting to the hospital. Today I was driven. Tomorrow I embark on the adventure called 'public transport.' Now, I don't want to come off sounding like a snob, but I haven't been on a bus in years, and for one good reason: they're simply not convenient. Tomorrow I will be getting one of three buses. The better option will get me there 30 minutes before my treatment begins and leaves 30 minutes after it ends. That's an hour's wait each day. They'll be about a week where I'm not getting the bus, so give a take an hour I've wasted about a day of my life. All because of public transport. Now I'm just winging, but hey that's what the internet's for. A full report will be available tomorrow.
I went to see the man responsible for removing my tumor in the first place last week. The surgeon said my scar's healing well and booked me in for another MIR scan. I haven't got a date yet, but I'll let you all know. There's some positive news on glass of wine front. He didn't say I couldn't have one. What he did say was that alcohol would inhibit the drugs that I'm on, and that could lead to me having another fit. But it was my decision and that he couldn't tell me what to do. I'll at least wait until the end of the radiotherapy before I give into temptation.
I'll give you a bus review tomorrow. Until then...
Wednesday, 28 April 2010
Whisker soup and other adventures of a radiotherapist
Just been to the 'dress rehearsal' for my radiotherapy treatment. The session was to mark out exactly where they're pointing their laser beams next week.
I'll begin by describing the machinery involved. The contraption includes a horizontal bench, which the patient lies on, a semi-circular arm (imagine a backwards letter 'c'), and box mounted on the arm which contains all the laser beams. The arm can be moved in pretty much any direction. The bench can also be rotated. This was part of today's adventure: to get all this gadgetry in the right position.
The second part was to mark out the mask in various ways to make sure they're targeting the right bit of my head. The mask as I've explained before is a thin plastic mesh that covers the whole face, with a little hole for your nose so you can breathe. You can not see, nor can you talk. It was, therefore, difficult to comprehend exactly what was going on.
There were at least two women in the room. Both of smelt of anti-bacterial gel, and talked in numbers. They hovered around my head sticking sticky things to the mask and scribbling on it. For all I know they were gold stars and glitter and they'd written the word 'twat' across my forehead. Although I guess it's more likely they were marking out where my head needs to be for the treatment.
The term 'whisker soup' also came up a lot, and it came in this context: "We're going to need whisker soup on this side." Unless they were discussing lunch and radiotherapists have predilection for some kind of feline delicacy, I'm guessing it's a radiotherapy term. I realise now I should've asked, but they'll be plenty of time for that later.
Other than a bright light going on and off, and whirring of machinery, that's about it. The whole thing didn't take anymore than 20 minutes. The actual treatment sessions shouldn't be any longer. They begin on Tuesday and will last six glorious weeks.
I have an appointment with the surgeon tomorrow, just to see how I'm getting on. Will let you know how that goes.
J
I'll begin by describing the machinery involved. The contraption includes a horizontal bench, which the patient lies on, a semi-circular arm (imagine a backwards letter 'c'), and box mounted on the arm which contains all the laser beams. The arm can be moved in pretty much any direction. The bench can also be rotated. This was part of today's adventure: to get all this gadgetry in the right position.
The second part was to mark out the mask in various ways to make sure they're targeting the right bit of my head. The mask as I've explained before is a thin plastic mesh that covers the whole face, with a little hole for your nose so you can breathe. You can not see, nor can you talk. It was, therefore, difficult to comprehend exactly what was going on.
There were at least two women in the room. Both of smelt of anti-bacterial gel, and talked in numbers. They hovered around my head sticking sticky things to the mask and scribbling on it. For all I know they were gold stars and glitter and they'd written the word 'twat' across my forehead. Although I guess it's more likely they were marking out where my head needs to be for the treatment.
The term 'whisker soup' also came up a lot, and it came in this context: "We're going to need whisker soup on this side." Unless they were discussing lunch and radiotherapists have predilection for some kind of feline delicacy, I'm guessing it's a radiotherapy term. I realise now I should've asked, but they'll be plenty of time for that later.
Other than a bright light going on and off, and whirring of machinery, that's about it. The whole thing didn't take anymore than 20 minutes. The actual treatment sessions shouldn't be any longer. They begin on Tuesday and will last six glorious weeks.
I have an appointment with the surgeon tomorrow, just to see how I'm getting on. Will let you know how that goes.
J
Thursday, 15 April 2010
May the 4th be with you
The date has been set for my radiotherapy treatment to start. And in case you haven't guessed it's May 4th.
But before we get into that there's the unusual procedure of making a mask that perfectly fits every contour of the face. First, take a near molten sheet of plastic and apply to the face. Secondly let set. And that's about it. Not, actually, an unpleasant experience. It's what I imagine it would be like to be attacked by a face-hugger from the Alien films, only without the egg laying and chest bursting business. There's a little hole for the nose to allow you to breathe. Fingers crossed I don't get a cold.
There's kind of a cross-hatching where the plastic is thicker. At its thinnest it's actually opaque and you can see through it. I'll try and get a picture at some point, or even better nab it when the treatment is over.
What followed was the CT scan while wearing the mask. This gives them a better idea of where to target their laser beams. All done in half an hour.
So here's the timeline: I have an appointment for a dummy run on the 28th April, just to make sure they've got their maths right. Then we do the first one proper on 4th May. This is followed by 30 daily treatments, not counting weekends, which should take us up to mid June.
Other than another MIR scan the surgeons want to do that should, hopefully, maybe, fingers crossed, be about it.
Will keep you up to date.
J
But before we get into that there's the unusual procedure of making a mask that perfectly fits every contour of the face. First, take a near molten sheet of plastic and apply to the face. Secondly let set. And that's about it. Not, actually, an unpleasant experience. It's what I imagine it would be like to be attacked by a face-hugger from the Alien films, only without the egg laying and chest bursting business. There's a little hole for the nose to allow you to breathe. Fingers crossed I don't get a cold.
There's kind of a cross-hatching where the plastic is thicker. At its thinnest it's actually opaque and you can see through it. I'll try and get a picture at some point, or even better nab it when the treatment is over.
What followed was the CT scan while wearing the mask. This gives them a better idea of where to target their laser beams. All done in half an hour.
So here's the timeline: I have an appointment for a dummy run on the 28th April, just to make sure they've got their maths right. Then we do the first one proper on 4th May. This is followed by 30 daily treatments, not counting weekends, which should take us up to mid June.
Other than another MIR scan the surgeons want to do that should, hopefully, maybe, fingers crossed, be about it.
Will keep you up to date.
J
Monday, 12 April 2010
Pigeons, scar update and waiting.
Ever considered the life of pigeons? Due to Jack's love of animals we recently installed a bird feeding station in the back garden. This was intended to encourage a variety of species of our feathered friends for both the education and cheap entertainment of our young son. What we got was a fat pigeon and a slightly less fat pigeon.
Over the last week Jack and I have witness a sinister culture of bullying, intimidation and violence. Starlings, finches and black birds are living in fear of the two 'flying rats' and are unable to access our generous offering. Indeed some smaller pigeons are also victim to these attacks. I'm not sure whether these birds are female and this is a case of domestic violence or not, but look at this evidence:
Of course it's just possible a cat had it and I've got too much time on my hands. It has been a slow week.
In brain tumor related news I'll be going for my mask fitting and CT scan on Thursday. My radiotherapy should start a few weeks later. Will let you know how it goes. And for those of you sick freaks who want to know how my scar's looking:
Just like Harry Potter.
J.
Over the last week Jack and I have witness a sinister culture of bullying, intimidation and violence. Starlings, finches and black birds are living in fear of the two 'flying rats' and are unable to access our generous offering. Indeed some smaller pigeons are also victim to these attacks. I'm not sure whether these birds are female and this is a case of domestic violence or not, but look at this evidence:
Of course it's just possible a cat had it and I've got too much time on my hands. It has been a slow week.
In brain tumor related news I'll be going for my mask fitting and CT scan on Thursday. My radiotherapy should start a few weeks later. Will let you know how it goes. And for those of you sick freaks who want to know how my scar's looking:
Just like Harry Potter.
J.
Saturday, 3 April 2010
Further treatment
Been to see the consultant this week, and they are going to be giving me more treatment. Specifically radiotherapy. This is just to be on the safe side and is standard procedure for a grade 2 tumor. They just want to make sure they've got it all.
For those of you don't know the side effects of radiotherapy mainly include tiredness and possibly nausea. They'll also a little temporary baldness where the beam goes into my head. But they don't include death, which is a good thing.
It will however mean going into hospital every week day for six weeks! I realise I'm whinging here, but it is going to pain in the bum, not literally. Each session will take about twenty minutes. It's going to be getting to hospital that's going to be the problem. As I can't drive at the moment I'm going to have to rely on Anisa, the bus and hospital transport. I shall be comparing and contrasting the three over the coming weeks. It's a small price to pay for making sure it's not coming back.
So here's what's going to happen. I'll be going to get another CT scan at some point next week. This is to get measured for a special Phantom of the Opera style mask that I'll be wearing for each treatment. Fingers crossed I get to keep it at the end. It's to make sure they target the area as accurately as possible.
The treatment will begin a few weeks later. Clever scientists have to do some clever maths as to where to points the radiation gun. I'm hoping it'll look like something out of a Bond film. I'm also hoping after the brain surgery failed to unleash my dormant psychic powers this treatment will give me some kind superpower.
So I'm not quite at the end of it yet, but as I said before I'll do whatever's necessary to get through this thing.
Will let you know how I get on with the mask fitting.
J
For those of you don't know the side effects of radiotherapy mainly include tiredness and possibly nausea. They'll also a little temporary baldness where the beam goes into my head. But they don't include death, which is a good thing.
It will however mean going into hospital every week day for six weeks! I realise I'm whinging here, but it is going to pain in the bum, not literally. Each session will take about twenty minutes. It's going to be getting to hospital that's going to be the problem. As I can't drive at the moment I'm going to have to rely on Anisa, the bus and hospital transport. I shall be comparing and contrasting the three over the coming weeks. It's a small price to pay for making sure it's not coming back.
So here's what's going to happen. I'll be going to get another CT scan at some point next week. This is to get measured for a special Phantom of the Opera style mask that I'll be wearing for each treatment. Fingers crossed I get to keep it at the end. It's to make sure they target the area as accurately as possible.
The treatment will begin a few weeks later. Clever scientists have to do some clever maths as to where to points the radiation gun. I'm hoping it'll look like something out of a Bond film. I'm also hoping after the brain surgery failed to unleash my dormant psychic powers this treatment will give me some kind superpower.
So I'm not quite at the end of it yet, but as I said before I'll do whatever's necessary to get through this thing.
Will let you know how I get on with the mask fitting.
J
Friday, 26 March 2010
The results are in...
...And it's great news. All grade 2, just as the previous biopsy had shown. It means it's slowest growing form of cancer and the easiest to get rid of. So, as far as cancer goes, it's the best kind to have.
What happens next? Well, I'll be meeting with the consultant radiologist next week to see about further treatment. I've got a feeling they may wait for the six week scan to see how much they got out during the op. Best case scenario they got all of it and that'll be that. If there's still some in there then I'll be having some radiology, but chemotherapy's looking less likely.
I can't tell you how relieved I am. It's been a nervous few days waiting for the phone to ring. I feel the worst of is finally out of the way, and I can concentrate on getting back to normality. I realise we're not out the woods yet, but it should be all down hill from here.
Thank you once again for all your well wishing and cards. Hopefully you'll soon be able to stop and leave me alone.
Love you
J
What happens next? Well, I'll be meeting with the consultant radiologist next week to see about further treatment. I've got a feeling they may wait for the six week scan to see how much they got out during the op. Best case scenario they got all of it and that'll be that. If there's still some in there then I'll be having some radiology, but chemotherapy's looking less likely.
I can't tell you how relieved I am. It's been a nervous few days waiting for the phone to ring. I feel the worst of is finally out of the way, and I can concentrate on getting back to normality. I realise we're not out the woods yet, but it should be all down hill from here.
Thank you once again for all your well wishing and cards. Hopefully you'll soon be able to stop and leave me alone.
Love you
J
Wednesday, 24 March 2010
I am home!
Yes, less than a week after having major brain surgery I got home last night. And it's good to be back.
So how am I feeling? A little tired and a little weak, but other than that I'm doing well. It was the same after the last op only a little worse. What can I expect after being bed-bound for three days and another stuck on a hospital ward. My strength will return.
It was wonderful to see Jack. He's changed so much in just a week. A lot more vocal, and nursery have got him doing high-fives. A little American, but I forgive them. He's just getting over a cold, but was happy enough last night. He looked pleased to see me anyway.
Now, many of you have asked to see pictures of my scar. So, for the squeamish look away now:
As you can see it's a bit of a mess at the moment but I'm not allowed to clean it for another 48 hours. Once all the scabs lift off it should look quite neat, and my hair will grow back over the top anyway. That's until I start losing it anyway.
Thanks for all the cards and well wishing over the last few days. They're most appreciated. Will be updating you with the histology results as and when I get them.
Love you all
J
So how am I feeling? A little tired and a little weak, but other than that I'm doing well. It was the same after the last op only a little worse. What can I expect after being bed-bound for three days and another stuck on a hospital ward. My strength will return.
It was wonderful to see Jack. He's changed so much in just a week. A lot more vocal, and nursery have got him doing high-fives. A little American, but I forgive them. He's just getting over a cold, but was happy enough last night. He looked pleased to see me anyway.
Now, many of you have asked to see pictures of my scar. So, for the squeamish look away now:
As you can see it's a bit of a mess at the moment but I'm not allowed to clean it for another 48 hours. Once all the scabs lift off it should look quite neat, and my hair will grow back over the top anyway. That's until I start losing it anyway.
Thanks for all the cards and well wishing over the last few days. They're most appreciated. Will be updating you with the histology results as and when I get them.
Love you all
J
Monday, 22 March 2010
And so the wait goes on
Not going home today kids. It's looking more like tomorrow or Wednesday now. They just want to give me the histoligy results from what they removed last week before I go. So the nail biting continues.
I noticed a very subtle weakness down my right hand side yesterday. It appears my hand writing has been affected. Not so much as it's become illegible, but anyone who knows the way I write would spot the difference. This is due to the swelling, and should get back to normal with the help of a few steroids.
I have to admit to a bit of a panic in the days following the op. I couldn't get my words out. At first I thought they'd damaged the creative area of my brain. It was a little terrifying for a while. But this has also subsided and am pretty much back to normal.
I was allowed off the ward for the first time last night. Just down to the cafe. It's the furthest I've walked in few days, and was nice to get off the ward.
Will let you all know about the histoligy results, and when I'm going to be out.
J
I noticed a very subtle weakness down my right hand side yesterday. It appears my hand writing has been affected. Not so much as it's become illegible, but anyone who knows the way I write would spot the difference. This is due to the swelling, and should get back to normal with the help of a few steroids.
I have to admit to a bit of a panic in the days following the op. I couldn't get my words out. At first I thought they'd damaged the creative area of my brain. It was a little terrifying for a while. But this has also subsided and am pretty much back to normal.
I was allowed off the ward for the first time last night. Just down to the cafe. It's the furthest I've walked in few days, and was nice to get off the ward.
Will let you all know about the histoligy results, and when I'm going to be out.
J
Saturday, 20 March 2010
I had a brain tumor
I don't suppose I can't ever express the amount of relief I feel at the moment. I've been told between 90 and 100% of the tumor is gone and I can still wiggle all my toes and fingers. Of course let's not get too optimistic just yet. There still could 10% lurking in there waiting to pounce, but I can't be happier with how it's all gone.
So, to recap the last few days:
WEDNESDAY
The big day. Not too nervous. Went down about 8.10am. The last person I remember speaking to, before they knocked me out, reminded me of the dad from Peppa Pig. His name was George. Woke up at about 2pm in the recovery room. Was relieved to find I wasn't paralysed. Was then moved to the joy that was critical care.
Now you would have hoped critical care was a quiet and serene place. It was not. The amount bleeping and whirring would've put R2D2 to shame. It was here I discovered there was a tube going into my head to get rid of all crap from my operation. One going my neck to put stuff in. Three in my hand to put more stuff in and monitor my blood pressure. An oxygen mask. And a catheter. Not a pretty site. The first one to come out was the blood pressure one. This was an accident on my part, and ment I had to wear a blood pressure monitoring cuff all night. This kept inflating every hour on the hour. Did not get any sleep.
THURSDAY
More time in critical care. Then an MIR scan for lunch. The three inch tube was taken out my neck. A strange sensation. Then up to what's called 'step down,' a ward where neurology patients go to recover. And then I had the brain drain removed.
Now to say a nurse simply grabbed the tube and pulled wouldn't be too far from the truth. In fact that's actually what she did, but not before removing the stitch that was holding it in place. Another strange sensation. She then wrapped the rather attractive bandage around my head that I'm wearing as I write this. Had a better night's sleep.
FRIDAY
A much quieter day. Had the other two tubes removed from my hand and was off the oxygen. Still bed bound due to catheter, but I was happy man. Moved again back home to ward 43.
SATURDAY
Catheter out. Up and about, or 'mobilised' as they like to call it here. Updating blog.
So there you have it: a brief summary of a few days in the life of a brain tumor patient. Hopefully will be out Monday.
Come and see me, and of course bring cake.
J
So, to recap the last few days:
WEDNESDAY
The big day. Not too nervous. Went down about 8.10am. The last person I remember speaking to, before they knocked me out, reminded me of the dad from Peppa Pig. His name was George. Woke up at about 2pm in the recovery room. Was relieved to find I wasn't paralysed. Was then moved to the joy that was critical care.
Now you would have hoped critical care was a quiet and serene place. It was not. The amount bleeping and whirring would've put R2D2 to shame. It was here I discovered there was a tube going into my head to get rid of all crap from my operation. One going my neck to put stuff in. Three in my hand to put more stuff in and monitor my blood pressure. An oxygen mask. And a catheter. Not a pretty site. The first one to come out was the blood pressure one. This was an accident on my part, and ment I had to wear a blood pressure monitoring cuff all night. This kept inflating every hour on the hour. Did not get any sleep.
THURSDAY
More time in critical care. Then an MIR scan for lunch. The three inch tube was taken out my neck. A strange sensation. Then up to what's called 'step down,' a ward where neurology patients go to recover. And then I had the brain drain removed.
Now to say a nurse simply grabbed the tube and pulled wouldn't be too far from the truth. In fact that's actually what she did, but not before removing the stitch that was holding it in place. Another strange sensation. She then wrapped the rather attractive bandage around my head that I'm wearing as I write this. Had a better night's sleep.
FRIDAY
A much quieter day. Had the other two tubes removed from my hand and was off the oxygen. Still bed bound due to catheter, but I was happy man. Moved again back home to ward 43.
SATURDAY
Catheter out. Up and about, or 'mobilised' as they like to call it here. Updating blog.
So there you have it: a brief summary of a few days in the life of a brain tumor patient. Hopefully will be out Monday.
Come and see me, and of course bring cake.
J
Thursday, 18 March 2010
I is back
A little tired, so I'll keep this short. Just to let you know the op went well. A little slow in processing stuff and a tube sticking out of my head at the moment.
Will be in touch. Love you all.
J
Will be in touch. Love you all.
J
Tuesday, 16 March 2010
Back in chokey... but only just.
My first blog from my hospital bed, but it almost wasn't. It's been a faff of a day.
Got a call at lunch time saying there were no beds, but you have to come in for pre-op tests. Had some some blood taken. Had my nose and testicles swabbed for MRSA. Had a CT scan. Then came the MRI. First I wasn't to be having one, then I was. Then they forgot to stick plastic discs on my head so I missed my turn. Then an emergency came in. Then the doctor put the wrong date on the form, so they had to fill in another form. Two hours later I got my scan. The nurse actually rang home thinking I'd gone AWOL!
Then when getting my final checks by the doc they told me they had a bed. Anisa had, however, gone to get Jack by this point and taken my bags with her. Then my phone ran out of battery.
But all is right with the world now.
An update on what's happening tomorrow: operation's at 8am. I'll be in intensive care for 24 hours so won't be in contact probably for a couple of days.
Love you all
J
Got a call at lunch time saying there were no beds, but you have to come in for pre-op tests. Had some some blood taken. Had my nose and testicles swabbed for MRSA. Had a CT scan. Then came the MRI. First I wasn't to be having one, then I was. Then they forgot to stick plastic discs on my head so I missed my turn. Then an emergency came in. Then the doctor put the wrong date on the form, so they had to fill in another form. Two hours later I got my scan. The nurse actually rang home thinking I'd gone AWOL!
Then when getting my final checks by the doc they told me they had a bed. Anisa had, however, gone to get Jack by this point and taken my bags with her. Then my phone ran out of battery.
But all is right with the world now.
An update on what's happening tomorrow: operation's at 8am. I'll be in intensive care for 24 hours so won't be in contact probably for a couple of days.
Love you all
J
T'was the day before the night before the day of the operation
So, the wait is almost over and tomorrow I have the biggest operation of my young life. To be fair it's only the second, but it's still quite big.
I keep getting asked the same question, 'How are you doing?'
'Fine', is the usual response. However what's in my head, as you might expect, is a little more complicated. Physically I feel as normal as I did before this whole adventure started, aside from a little extra weight. Mentally is more difficult to put into words.
I will admit there is an element of sheer terror about what's going to happen tomorrow. I could be left paralysed, not be able to talk, or I could die. But fear does not top the list. I've always thought that I would collapse under such pressure, not that I've ever given it much thought. But some kind of autopilot of determination has kicked in. Determination to beat this thing. And I don't want talk of being 'brave' or 'strong.' So far, it really hasn't been an effort. Whether this is blind hope and being unable to accept what's happening to me, or whether I'm just being very positive is difficult to say. Perhaps the two are the same.
I guess it all comes down to acceptance. It is was it is and there's nothing else so deal with it. I don't believe in God or fate. Things just happen and this has happened to me. I don't suppose you can 'make the best of' brain cancer, but it does shine a light on everything else. Like I've said before it's the little things that become important.
Now, everyone who reads this is going to die at some point. Don't worry the blog's not cursed or anything. It's just a fact of nature. Most of you will never be told by someone qualified to do so that it could be sooner rather than later. Is that better or worse? Who knows? But my point is it shouldn't really make any difference. I'm not going to tell to write that novel you've always wanted to, or climb Everest. I've known I've got cancer for a couple of weeks now, and some of that time has been spent in the company of Bargain Hunt and Homes Under the Hammer. What I have done is refocused on what is important. It's an interesting excersise, and I'm not going to tell you the results here, but it's one I recommend doing. So all you have to do is pretend you have a life threatening illness, it doesn't have to be a brain tumor, and get prioritising.
It some respects this is more difficult on everyone else. It may be happening to me, but I have no choice. Everyone else has to react and deal with whatever happens next. I've been overwhelmed with the amount of people asking how they can help. From cash to baby sitting Jack. I suppose it's the sense of helplessness that, unless you're a brain surgeon, there's little you can do. Thank you for all your offers. They mean more than the actual acts. You never really know how you've impacted on someone's life until something like this happens. It means a lot.
So that's basically what's going on in my head. I am terrified, but I'm happy to except whatever comes. Of course I'm saying that at a time when I'm fully able, and not in any pain or discomfort. That may change.
Just waiting for the call now as to when I go back into hospital. It should be sometime this afternoon or early evening. Technology and the operation permitting I should be in touch again tomorrow with another post.
Love you all
J
I keep getting asked the same question, 'How are you doing?'
'Fine', is the usual response. However what's in my head, as you might expect, is a little more complicated. Physically I feel as normal as I did before this whole adventure started, aside from a little extra weight. Mentally is more difficult to put into words.
I will admit there is an element of sheer terror about what's going to happen tomorrow. I could be left paralysed, not be able to talk, or I could die. But fear does not top the list. I've always thought that I would collapse under such pressure, not that I've ever given it much thought. But some kind of autopilot of determination has kicked in. Determination to beat this thing. And I don't want talk of being 'brave' or 'strong.' So far, it really hasn't been an effort. Whether this is blind hope and being unable to accept what's happening to me, or whether I'm just being very positive is difficult to say. Perhaps the two are the same.
I guess it all comes down to acceptance. It is was it is and there's nothing else so deal with it. I don't believe in God or fate. Things just happen and this has happened to me. I don't suppose you can 'make the best of' brain cancer, but it does shine a light on everything else. Like I've said before it's the little things that become important.
Now, everyone who reads this is going to die at some point. Don't worry the blog's not cursed or anything. It's just a fact of nature. Most of you will never be told by someone qualified to do so that it could be sooner rather than later. Is that better or worse? Who knows? But my point is it shouldn't really make any difference. I'm not going to tell to write that novel you've always wanted to, or climb Everest. I've known I've got cancer for a couple of weeks now, and some of that time has been spent in the company of Bargain Hunt and Homes Under the Hammer. What I have done is refocused on what is important. It's an interesting excersise, and I'm not going to tell you the results here, but it's one I recommend doing. So all you have to do is pretend you have a life threatening illness, it doesn't have to be a brain tumor, and get prioritising.
It some respects this is more difficult on everyone else. It may be happening to me, but I have no choice. Everyone else has to react and deal with whatever happens next. I've been overwhelmed with the amount of people asking how they can help. From cash to baby sitting Jack. I suppose it's the sense of helplessness that, unless you're a brain surgeon, there's little you can do. Thank you for all your offers. They mean more than the actual acts. You never really know how you've impacted on someone's life until something like this happens. It means a lot.
So that's basically what's going on in my head. I am terrified, but I'm happy to except whatever comes. Of course I'm saying that at a time when I'm fully able, and not in any pain or discomfort. That may change.
Just waiting for the call now as to when I go back into hospital. It should be sometime this afternoon or early evening. Technology and the operation permitting I should be in touch again tomorrow with another post.
Love you all
J
Saturday, 13 March 2010
Because you're worth it...
Hello all. It's been a slow week to say the least. So much so I've been considering compiling a list of pseudo-science terms used in TV adverts. There's one annoying one in particular for an eye lash torturing device that uses the theme tune from Magnum PI. Why Magnum PI? How can one of the most masculine fictional characters of the twentieth century sell eye crap? All I can think is that women might want eye lashes that look like Tom Selleck's moustache. Like I said a slow week.
Went for lunch in Stratford and had a wonder around. It was a bit cold so the wondering was kept to a minimum, but we did find a sweet shop that sells chocolate covered espresso beans. Although there was some disappointment in Anisa actually liking and eating half of them. She can not stand coffee, and so I thought it was a safe purchase. Perhaps she was chocolate deprived.
I've has plenty of visitors through the week which was good. Thanks again for those who came. Some brought cake. Some did not. I shall not pass judgement. It's probably best I stay away from the cake given the state of my second chin anyway. I tried having a carrot earlier in lieu of biscuits. Fact: biscuits are better than carrots. Still there's Sunday lunch with Anisa's mum tomorrow and there's a treacle sponge involved at some point.
And so the waiting continues. No update on the health front. Still feeling fine. Still due in hospital on Tuesday with the op Wednesday.
Will check in before then.
J
Went for lunch in Stratford and had a wonder around. It was a bit cold so the wondering was kept to a minimum, but we did find a sweet shop that sells chocolate covered espresso beans. Although there was some disappointment in Anisa actually liking and eating half of them. She can not stand coffee, and so I thought it was a safe purchase. Perhaps she was chocolate deprived.
I've has plenty of visitors through the week which was good. Thanks again for those who came. Some brought cake. Some did not. I shall not pass judgement. It's probably best I stay away from the cake given the state of my second chin anyway. I tried having a carrot earlier in lieu of biscuits. Fact: biscuits are better than carrots. Still there's Sunday lunch with Anisa's mum tomorrow and there's a treacle sponge involved at some point.
And so the waiting continues. No update on the health front. Still feeling fine. Still due in hospital on Tuesday with the op Wednesday.
Will check in before then.
J
Saturday, 6 March 2010
Scabs, smells and BHS
Any day that ends with your partner removing dried blood from your scalp with a pair of tweezers is a good day. Yes, it may be disgusting but all the crap on my head is finally lifting off to reveal a very neat scar. Just a shame those nasty brain surgeons have to do it all over again.
While we're on the subject of disgusting there has been an air of less than, shall we say, purity in the Wall household. Take steroids long enough and wind, of the noxious variety, becomes a problem. I tend to be the one pushing Jack in public so I can blame him. Anisa has had to put up with a lot in the last few days. Luckily it appears the problem is subsiding, but any visitors have been warned.
And it has been a good day. A little shopping in Nuneaton, fish and chips for lunch and a walk in the park in the afternoon. As the cliche goes it's the little things that become important. It's the most I've done in a day in a long while and I'm knackered. I think the muscle mass in my legs is slowly turning into a second chin. It's amazing how a few weeks with only David Dickinson for company has an impact on the body.
Jack's been a little star as usual. Although he did run amok in BHS. It's the first time we let him wander in a shop under his own steam. He has a fascination with anything with wheels so was busy chasing pushchairs, shopping trolleys and even a mobility scooter round the store. This is what comes of giving chips to a young child for lunch. Jamie Oliver would be appalled. So we thought we'd let him burn off all that energy in the park. There's some video of him on the slide here:
Getting him back in the car was a challenge. We had to play in the garden when we got home, cause he didn't want to go inside. Maybe he's going to be more of the outdoors type, unlike his dad. Maybe he'll even learn to ride a bike one day. There's time yet to get him into video games.
So that's why today is a good day.
Love to you all
J
While we're on the subject of disgusting there has been an air of less than, shall we say, purity in the Wall household. Take steroids long enough and wind, of the noxious variety, becomes a problem. I tend to be the one pushing Jack in public so I can blame him. Anisa has had to put up with a lot in the last few days. Luckily it appears the problem is subsiding, but any visitors have been warned.
And it has been a good day. A little shopping in Nuneaton, fish and chips for lunch and a walk in the park in the afternoon. As the cliche goes it's the little things that become important. It's the most I've done in a day in a long while and I'm knackered. I think the muscle mass in my legs is slowly turning into a second chin. It's amazing how a few weeks with only David Dickinson for company has an impact on the body.
Jack's been a little star as usual. Although he did run amok in BHS. It's the first time we let him wander in a shop under his own steam. He has a fascination with anything with wheels so was busy chasing pushchairs, shopping trolleys and even a mobility scooter round the store. This is what comes of giving chips to a young child for lunch. Jamie Oliver would be appalled. So we thought we'd let him burn off all that energy in the park. There's some video of him on the slide here:
Getting him back in the car was a challenge. We had to play in the garden when we got home, cause he didn't want to go inside. Maybe he's going to be more of the outdoors type, unlike his dad. Maybe he'll even learn to ride a bike one day. There's time yet to get him into video games.
So that's why today is a good day.
Love to you all
J
Wednesday, 3 March 2010
Are we sitting comfortably...
So here it is: my first blog entry. I swore I'd never do something like this but now I have a brain tumor and you all want to know so much about it I thought it'd be the best way to get information across. You can choose to dip in and out as you please.
Please don't expect anything too profound or poetic. This will quickly descend into reviews of day time telly.
Some of you already know I got the results of the biopsy earlier this week so they'll be some repetition here.
I have a brain tumor, and it is cancer. There's a fun sentence everyone hopes they never have to say, but the news could've been worse.
Tumors are graded from one to four. One being benign, four being your fudged. The biopsy results show I have a grade 2 tumor, which means it's treatable and I can make a full recovery.
So here's the plan. On March the 17th I'll be having another operation where some clever doctors will cut a hole in my head and take out as much of the tumor as they can without making me go wonky. By going wonky I mean the loss of memory, speech and the use of the right hand side of my body. And of course death. These are the risks, but I'm not too worried. They've been in before and they didn't break anything, so we should be OK. I could have some temporary weakness down my right-hand side due to swelling but that will pass and I could be out the following week!
Now because brain surgery's not rocket science they won't be able to remove the whole tumor. This will probably mean some radiotherapy and possibly chemotherapy after to kill off the rest of it. I'll have another scan six weeks after the op to see what's going on and fingers crossed it isn't growing. We'll go from there.
So we're in for a long wait until I get the infamous 'all clear' but at least I know what I've got to do, and I'm finally cashing in those National Insurance contributions. I think I may actually come out with a profit.
Still feeling fine and have had a haircut, so I don't look too stupid. Have a kick-ass scar on my head as well. Will soon be adding to that.
Thank you for all your messages of support over the last few weeks. They really have meant a lot, but they are becoming a little sickening so if we could stick to cash/cake related gifts that would be more preferable.
Nothing much will be happening before the op, so not sure how much this is gonna be updated. Will have some more ramblings I'm sure before I go in. So do check back in.
Love you all
J
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