Go to bed at 11pm on Monday night.
Wake up at 7:30pm Tuesday evening.
Move to sofa
Go back to bed at 11:00pm
Wake at 8:00am
Still tired.
Thursday, 26 August 2010
Tuesday, 24 August 2010
ever the optimist
The problem with this damn blog is that now most my family read it. And the problem with that is, if you put how you really feel sometimes, they will inadvertently worry.
Let's say hypothetically, you're sick of feeling pain, sick of having to leave work to get into a hot bath, sick of feeling lethargic and not having the energy to even create music, sick of chemo, cancer and talking about it, so sick of everything that you wonder why the hell you bother getting up ever day to face another round of the battle, so sick of the pills, hospitals, pain and fucking BOREDOM of it all .... well, you'll find yourself not posting it quite as brutally honestly as that, as someone is bound to then ring you, concerned about your well-being and mental state. Whereupon you'll have to reassure them that actually you're OK and 'battling on' when the last thing is the world you want to do is talk to anyone about your sodding illness.
So you don't. Because you don't want to worry them. Instead, you fill your blogs with some humour and optomism even when you don't actually feel humorous or optimistic. You don't actually write that if someone had left a gun on the pillow, you'd probably have taken your head off by now, as that could potentially cause worry amongst those that love you.
No, it's best to balance each blog with a healthy dose of self-depreciating humour and if possible, a video or some music. This keeps everyone happy.
Hey look !!! I'm in this promo video. My life is fucking great! Yay!
Let's say hypothetically, you're sick of feeling pain, sick of having to leave work to get into a hot bath, sick of feeling lethargic and not having the energy to even create music, sick of chemo, cancer and talking about it, so sick of everything that you wonder why the hell you bother getting up ever day to face another round of the battle, so sick of the pills, hospitals, pain and fucking BOREDOM of it all .... well, you'll find yourself not posting it quite as brutally honestly as that, as someone is bound to then ring you, concerned about your well-being and mental state. Whereupon you'll have to reassure them that actually you're OK and 'battling on' when the last thing is the world you want to do is talk to anyone about your sodding illness.
So you don't. Because you don't want to worry them. Instead, you fill your blogs with some humour and optomism even when you don't actually feel humorous or optimistic. You don't actually write that if someone had left a gun on the pillow, you'd probably have taken your head off by now, as that could potentially cause worry amongst those that love you.
No, it's best to balance each blog with a healthy dose of self-depreciating humour and if possible, a video or some music. This keeps everyone happy.
Hey look !!! I'm in this promo video. My life is fucking great! Yay!
Sunday, 22 August 2010
bedroom artists in desperate need of fans - apply within
Hello ...
AS you might now, my musical artist name is "Delete All Contacts" and I'm trying to sort out a Facebook page for this. Once a certain amount of fans are reached, Facebook will allow me to have a easy to remember link to the page - something like facebook.com/deleteallcontacts.
However to get that, I need more fans and 'liking' ... so can I ask all of you with Facebook accounts to hop along to
http://www.facebook.com/pages/DeleteAllContacts/97729335420
and become a fan by 'liking' the page - I'd appreciate it. I'm uploading my vidoes, photos and newer tracks as we speak.
Thanks.
AS you might now, my musical artist name is "Delete All Contacts" and I'm trying to sort out a Facebook page for this. Once a certain amount of fans are reached, Facebook will allow me to have a easy to remember link to the page - something like facebook.com/deleteallcontacts.
However to get that, I need more fans and 'liking' ... so can I ask all of you with Facebook accounts to hop along to
http://www.facebook.com/pages/DeleteAllContacts/97729335420
and become a fan by 'liking' the page - I'd appreciate it. I'm uploading my vidoes, photos and newer tracks as we speak.
Thanks.
Friday, 20 August 2010
the boy with a thorn in his side
Christ ... what a week. I say that like it's over, but it's not over, but it's still been a hell of week.
It started last Wednesday, the day before Chemo. I woke and something inside had broken. I'm not sure why, but I felt looooooooooow. Actually, I do know why, what a stupid thing to say. It was because I had Chemo the next day and whilst I have been fairly good at facing The Evil One square-on recently, I found my will had broken somewhat and bought me crashing down into a pit of self-pity and unwillingness to carry on with this ridiculous regime.
However, like a good boy, I took my medicine as Thursday and Friday melded into one. I slept a lot, using a few Lorazapam pill to get me over the worst. Long, trippy dreams - night into day, day into night. I was just 'not here' until Saturday, where I started to piece things together again. To be honest, it wasn't until Sunday evening that I felt almost human again ... and that's when my ol' friend The Pain came knocking on my door.
The problem comes when I stop taking my steroids after my Chemo. About Monday. Then *it* kicks in.
I've documented The Pain before, but if you've just landed here or are out of the loop, then The Pain is basically *something* that's going on in my 'insides', to the left of my stomach, pretty much where my spleen used to lay - suspected adhesions, or perhaps the surgeon assistant left a cheap earring in my intestines, who knows?
The Pain manifests itself like someone squeezing an intestine with a flat pair of pliers and then holding onto the squeeze for hours. Sometimes giving it a twist for fun. The Pain is one sick bastard and The Pain was very, very bad this week. The attacks tend to happen at either 2:00am or 4:00am - then again at lunchtime and then the big one seems to come at 5:30pm. These evening sessions has pretty much ruined every night at home I've had this week.
For example, I was found by a work colleague on Wednesday night in the company car-park. I had left 25 minutes before him, but I hadn't made it into my car, but was on tips toes, face scrunched and hugging my car roof .. too painful to drive for a good hour.
And this has been my week. Pain attacks interspersed with working. It's not a lot of fun, but then again, Cancer apparently isn't ... and although this is some secondary ailment, I'm still firming pointing my accusing finger at Cancer for inviting his best friend, The Pain, to the party.
The solution? God knows. Lots of painkillers and lots of gritted teeth. On the plus, my pain tolerance is getting pretty fucking good and once I'm out the other side, I should be able to earn a supplementary salary entertaining people by walking across hot coals whilst sticking daggers in my side, like a Victorian circus freak.
The official verdict is that nothing can be done whilst I'm still receiving Chemo and that could be for a while longer. So it's daily pain management for me.
I have another 'radioactive' PET scan on 31st of August, where The Powers That Be will be able to see how I'm getting on and how many more treatments I will need.
On the note, I'm not overly optimistic about stopping any time soon, as during my last check-up, my doctor found a (new?) 'pea-sized' lump under one armpit and one a bit bigger under the other. These lumps are all part of the lymphatic system, which is cancerous, so it would suggest that whilst on one hand I am obviously responding to treatment (I *look* a lot better for a start, even if I'm not feeling great), there is still work to be done.
So. Onwards. Clenched fists and all that. The weekend is welcome ... Pray that The Pain doesn't ruin it for me too much. I'm off to the iMax tomorrow lunchtime to see Toy Story 3(d) and the rest of the weekend will be spent watching 'soccer' and learning about synthesis/sound design.
I hope that you lot out there are well and fine and sorry to those that I've been ignoring recently. It's hard to chat/talk/email/post when you're focusing on The Pain. You don't want to talk about it and you get sick of explaining it - you get frustrated and snappy and ... well, 'best left alone' is probably hitting the nail on the head.
However, we'll speak soon, no doubt ... it would appear that I'm not going anywhere for a while.
-----------
Oh yeah, if anyone wants to help me with four days washing up, it would be appreciated, as my apartment smells of baked beans.
It started last Wednesday, the day before Chemo. I woke and something inside had broken. I'm not sure why, but I felt looooooooooow. Actually, I do know why, what a stupid thing to say. It was because I had Chemo the next day and whilst I have been fairly good at facing The Evil One square-on recently, I found my will had broken somewhat and bought me crashing down into a pit of self-pity and unwillingness to carry on with this ridiculous regime.
However, like a good boy, I took my medicine as Thursday and Friday melded into one. I slept a lot, using a few Lorazapam pill to get me over the worst. Long, trippy dreams - night into day, day into night. I was just 'not here' until Saturday, where I started to piece things together again. To be honest, it wasn't until Sunday evening that I felt almost human again ... and that's when my ol' friend The Pain came knocking on my door.
The problem comes when I stop taking my steroids after my Chemo. About Monday. Then *it* kicks in.
I've documented The Pain before, but if you've just landed here or are out of the loop, then The Pain is basically *something* that's going on in my 'insides', to the left of my stomach, pretty much where my spleen used to lay - suspected adhesions, or perhaps the surgeon assistant left a cheap earring in my intestines, who knows?
The Pain manifests itself like someone squeezing an intestine with a flat pair of pliers and then holding onto the squeeze for hours. Sometimes giving it a twist for fun. The Pain is one sick bastard and The Pain was very, very bad this week. The attacks tend to happen at either 2:00am or 4:00am - then again at lunchtime and then the big one seems to come at 5:30pm. These evening sessions has pretty much ruined every night at home I've had this week.
For example, I was found by a work colleague on Wednesday night in the company car-park. I had left 25 minutes before him, but I hadn't made it into my car, but was on tips toes, face scrunched and hugging my car roof .. too painful to drive for a good hour.
And this has been my week. Pain attacks interspersed with working. It's not a lot of fun, but then again, Cancer apparently isn't ... and although this is some secondary ailment, I'm still firming pointing my accusing finger at Cancer for inviting his best friend, The Pain, to the party.
The solution? God knows. Lots of painkillers and lots of gritted teeth. On the plus, my pain tolerance is getting pretty fucking good and once I'm out the other side, I should be able to earn a supplementary salary entertaining people by walking across hot coals whilst sticking daggers in my side, like a Victorian circus freak.
The official verdict is that nothing can be done whilst I'm still receiving Chemo and that could be for a while longer. So it's daily pain management for me.
I have another 'radioactive' PET scan on 31st of August, where The Powers That Be will be able to see how I'm getting on and how many more treatments I will need.
On the note, I'm not overly optimistic about stopping any time soon, as during my last check-up, my doctor found a (new?) 'pea-sized' lump under one armpit and one a bit bigger under the other. These lumps are all part of the lymphatic system, which is cancerous, so it would suggest that whilst on one hand I am obviously responding to treatment (I *look* a lot better for a start, even if I'm not feeling great), there is still work to be done.
So. Onwards. Clenched fists and all that. The weekend is welcome ... Pray that The Pain doesn't ruin it for me too much. I'm off to the iMax tomorrow lunchtime to see Toy Story 3(d) and the rest of the weekend will be spent watching 'soccer' and learning about synthesis/sound design.
I hope that you lot out there are well and fine and sorry to those that I've been ignoring recently. It's hard to chat/talk/email/post when you're focusing on The Pain. You don't want to talk about it and you get sick of explaining it - you get frustrated and snappy and ... well, 'best left alone' is probably hitting the nail on the head.
However, we'll speak soon, no doubt ... it would appear that I'm not going anywhere for a while.
-----------
Oh yeah, if anyone wants to help me with four days washing up, it would be appreciated, as my apartment smells of baked beans.
Tuesday, 17 August 2010
With friends like these ...
Love you Simon ...
I LOL'ed hard.
Sent from my BlackBerry® 9700 wireless device
Wednesday, 11 August 2010
Oh, *that* much
I really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, do not want to go for sodding chemo tomorrow.
Saturday, 7 August 2010
fed up (again)
I'm fed up.
I mean, overall, things are kinda OK. But I'm fed up with it all now. Fed up with chemo, cancer, pain, stomach problems, whinging, blogs, feeling tired, being optimistic, being unfit, being bald, talking about it, pills, people talking about it and everything that comes with this tedious illness.
The week before last I was in a hideous mood. The pain in my gut had become a daily grind. The pain nurse has put me on a mild opiate (Tramadol) to mix with codeine, paracetamol and diclofenac as I see fit. Sometimes it feels like putting a sticking plaster on an axe wound but overall, I guess it's been better. But last week, I was ripping peoples heads off as they tried to converse with me. The only description that I could come up with was it was like someone talking to you about their summer holidays whilst someone had parked a car on your foot. Still, I managed to crawl through the working week without too much downtime and it was followed by a wedding which was a good day out and cheered me up.
This last week has been a mixed bag - some very good, busy days but some very, very painful moments. On Tuesday, I made the mistake of going to the cinema to see 'Inception', which was two and half hours of utter bollocks, not helped by the fact my eyes were watering with stomach cramps/pain. Thankfully on Thursday I was taken to see 'Shrink', at an amazing retro cinema called 'The Rex' in Berkhamsted, which has been renovated in the style of a 50's cinema. I can't recommend this place enough. The film restored my faith in Hollywood too.
However, I woke on Friday (yesterday), went to work for about 2 hours and had to leave. I had no energy at all, I was falling asleep at my desk. I went home, fell asleep in about 5 minutes and slept until 8pm. I woke, still feeling tired, went back to bed about 11:30pm and slept for 11 hours. Today I have yet to get out of my bedclothes and I don't think I will. I'm not sure what is going on, perhaps I've overcooked it, forgetting that my energy levels are still limited or ... oh, I don't know. But it's bloody annoying.
The good news is that I have a totally new thing to moan about. The tips of my fingers have gone numb. I was warned about this at the start of chemo, but it's only just started to happen. The ends feel tingly and numb - apparently this is semi-permanent and may return to normal in 5 or so years. Not to worry, I only really use the tips of my fingers for a couple of things - typing on a computer keyboard or playing the musical keyboard. *sigh*
So as you can tell from the complete lack of effort with my blog and this rambling mess, that I am fed up. I am probably one of the few people in England that is enjoying the downpours of rain outside the window this weekend. Sky Sports is showing some football, returning feelings of the end of summer and I have the 'shut the world out' feeling where I wish it was dark outside. On weekends like this, you don't want the sun to make you feel guilty about your downtime.
Saying that, I'm off out tomorrow for what could be a great day. Thanks to a great friend at work, I've got a pair of excellent seats for Manchester United vs Chelsea at Wembley Stadium - The Charity Shield. This should hopefully shake me out of my funk and be a good day out ... providing my insides don't play up too much. And United win.
So, on one hand, life is good ... there is lots to social stuff going on, I'm working more, I'm 'up and about' but on the other hand, there is the hour-by-hour volatile pain levels to deal with and odd days where I just crash out. And now, numb fingers. I guess I shouldn't expect miracles.
Chemo is on Thursday - it's come around quickly. It could be the last one for a while. I am not sure how well I will deal with the news that I have to have more. I'm tired of it. I'm fed up with it. I need a break from it.
We shall see.
I mean, overall, things are kinda OK. But I'm fed up with it all now. Fed up with chemo, cancer, pain, stomach problems, whinging, blogs, feeling tired, being optimistic, being unfit, being bald, talking about it, pills, people talking about it and everything that comes with this tedious illness.
The week before last I was in a hideous mood. The pain in my gut had become a daily grind. The pain nurse has put me on a mild opiate (Tramadol) to mix with codeine, paracetamol and diclofenac as I see fit. Sometimes it feels like putting a sticking plaster on an axe wound but overall, I guess it's been better. But last week, I was ripping peoples heads off as they tried to converse with me. The only description that I could come up with was it was like someone talking to you about their summer holidays whilst someone had parked a car on your foot. Still, I managed to crawl through the working week without too much downtime and it was followed by a wedding which was a good day out and cheered me up.
This last week has been a mixed bag - some very good, busy days but some very, very painful moments. On Tuesday, I made the mistake of going to the cinema to see 'Inception', which was two and half hours of utter bollocks, not helped by the fact my eyes were watering with stomach cramps/pain. Thankfully on Thursday I was taken to see 'Shrink', at an amazing retro cinema called 'The Rex' in Berkhamsted, which has been renovated in the style of a 50's cinema. I can't recommend this place enough. The film restored my faith in Hollywood too.
However, I woke on Friday (yesterday), went to work for about 2 hours and had to leave. I had no energy at all, I was falling asleep at my desk. I went home, fell asleep in about 5 minutes and slept until 8pm. I woke, still feeling tired, went back to bed about 11:30pm and slept for 11 hours. Today I have yet to get out of my bedclothes and I don't think I will. I'm not sure what is going on, perhaps I've overcooked it, forgetting that my energy levels are still limited or ... oh, I don't know. But it's bloody annoying.
The good news is that I have a totally new thing to moan about. The tips of my fingers have gone numb. I was warned about this at the start of chemo, but it's only just started to happen. The ends feel tingly and numb - apparently this is semi-permanent and may return to normal in 5 or so years. Not to worry, I only really use the tips of my fingers for a couple of things - typing on a computer keyboard or playing the musical keyboard. *sigh*
So as you can tell from the complete lack of effort with my blog and this rambling mess, that I am fed up. I am probably one of the few people in England that is enjoying the downpours of rain outside the window this weekend. Sky Sports is showing some football, returning feelings of the end of summer and I have the 'shut the world out' feeling where I wish it was dark outside. On weekends like this, you don't want the sun to make you feel guilty about your downtime.
Saying that, I'm off out tomorrow for what could be a great day. Thanks to a great friend at work, I've got a pair of excellent seats for Manchester United vs Chelsea at Wembley Stadium - The Charity Shield. This should hopefully shake me out of my funk and be a good day out ... providing my insides don't play up too much. And United win.
So, on one hand, life is good ... there is lots to social stuff going on, I'm working more, I'm 'up and about' but on the other hand, there is the hour-by-hour volatile pain levels to deal with and odd days where I just crash out. And now, numb fingers. I guess I shouldn't expect miracles.
Chemo is on Thursday - it's come around quickly. It could be the last one for a while. I am not sure how well I will deal with the news that I have to have more. I'm tired of it. I'm fed up with it. I need a break from it.
We shall see.
Tuesday, 3 August 2010
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