A new synth. The last synth I will probably ever buy. It's a beautiful Prophet 08 'Pots Editions' ('pots' are the little knobs - you can control everything from the front panel without needing to press lots of buttons to get to hidden features - each parameter has it's own 'pot' - just tweekers paradise).
It completes the 'hardware synth' part of my studio, which now consists of a DSI Mopho Keyboard, a Virus Ti2 Keyboard and the new DSI Prophet. Of course I have plenty of virtual synths in my PC - my love for Spectronics Omnisphere runs deep, but hey ... there's something so much more FUN about knob twiddling vs mouse clicking. We all like to twiddle our knobs. Purile humour is not beneath me.
My Prophet sits perfectly on my new "Ultimate Stand" in my beautiful new studio room. It makes me feel all warm and glowy.
Why am I posting this on my cancer blog ... Because there are some great things in my life and its good to remind myself how lucky I am. My 'toys' make the bits inbetween the pain, joyful.
I've sketched out a new song this afternoon - its a tongue-in-cheek vocal song. Sadly, due to the impending hospital visit it won't be ready for a while, but the song is laid out and will be ready to pick up when I get out of the zoo.
That is all regarding my new synth. I shall be stroking it this evening and then I'm going to attempt to go to work tomorrow. Wish me luck !
Wednesday, 3 November 2010
mankles, shut-ins, sleeping with towels and john merrick's neck muscles
I have Manacles. Mankles are a swollen ankles that only men get. Women get Kankles/Cankles but men get Mankles.
I made this word up. It is a skill word.
Why do I have Mankles? It's a 'rare' side-effect of the pain-killers I am taking. It's on the biblically epic side-effect list on the leaflet in the box of the pain-killers.
What does this mean. Well, walking is now less pleasant than it was - and walking used to be pretty shit anyhow to be honest, as lumping lumps around is no fun. Walking? I need a Segway.
That's moan number one. Let's move on. There's much to get through.
I am now officially a shut-in. A 'shut-in' is an American term for people who are too fat to leave the house and have to have crisps delivered by diggers, or something. They were floral dresses because no clothes fit and eventually Jerry Springer smashes down their house so they can leave, which make for good TV, but after a while they get cold and wish they hadn't agreed to it.
OK, so I'm not filling a lot of the above criteria but I think from now on, I won't be going too far under self-propulsion. Let me explain.
Last night I witnessed an amazing football match. For 90 mins, I sat on the edge on a football pitch and saw the World Class players of Inter Milan (current European Champions), being taken apart by (relatively) new sensation Gareth Bale and his fellow team-mates. The atmosphere was electric and did somewhat embarrass Old Trafford's sometimes quiet crowd (although White Hart Lane does have the advantage of being about half the size and tightly packed-in).
OK, so this isn't a football/soccer blog - what's my point? Well, the hours either side of the 90mins were VERY tough. The journey to my friend Mark's house who took me into London, was hard. Pain gripped my left hand side and by the time I got to his house, I was angry, stressed frustrated, sickly feeling and - well - not an ideal guest.
We were slightly late, and Mark drove to the ground. I lowered the car seats to a lying-down position and was shovelling down pain-killers and sweating and not really talking. Things got a bit better as the journey continued.
We then had a walk at the other end. I'm so slow and it's only when I get 'out there' that I realise how 'out there' I am. I feel different somehow. People bump into me and walk through me, chests puffed out on the way to the 'footy'. I meekly try not to get in anyone's way and try - but fail - not to moan or talk about cancer the entire walk.
Once in the ground, Mark introduced me to all the people around me in the Season Tickets holders seats and I felt more at home. I was able to relax a bit and enjoy one of the greatest games of European football that has been played for a long time.
Then came the walk home. I was knackered. My pace was so slow. Mark was struggling to 'keep down' (I assume this is the opposite of 'keep up') and I think I was starting to annoy him. I was annoying myself.
We finally got back to his place, I grabbed my car after a quick caffeine boost and drove home, thankfully with very few cars on the road. The side-pain ever present, I made a vow to myself that I wasn't doing these nights out anymore.
No car journeys over a few miles, if I'm not feeling 100% up for it. No crowded events (gigs, etc). No situations where I HAVE to walk a distance. Obvious local shopping etc is fine, as you can just stop for coffee or go home - but no 'there's a 20 min walk at the other end' type things.
I need to stay warm, safe and near a kettle, my bed, my sofa, my toys. It's a scary world out there and whilst, of course, I will be doing stuff, I really have to limit the areas to where I will go and what I will do.
A friend who was a MacMillian nurse for kids, said to me some time ago 'We tell all parents of cancer suffers to expect every day to be hard. If you get a good day, that is a bonus'. I didn't buy this when she told me. My days were mostly good and I fought hard again the bad. The balance of power has shifted now. Most days are tough. You get good 'periods'. You don't get good 'days' anymore - not what I would call a good day. A good day is a pain-free, able-to-drive, feeling-fit, eat what you like, drink what you like and not worry about poo'ing kind of day. Those days seem far behind me.
So, I am now a shut-in. You'll find me in my flat in my lounge-wear, tinkering on the internet or with music. Where it's warm, safe, soft and ...
... damp.
Christ, I sweat a lot. A lot. I know this isn't a new thing. But it's pretty rampant now. I go to bed with towels and I wake about every hour in the night, lean over and fumble for a towel (don't open my eyes - salt water will pour in), and towel myself dry.
Then about three times a night, I will quickly slide out of bed, into my en-suit bathroom and turn on the hot-air blaster heater thing that's on the wall. An amazing device, it gets so hot that it could take the skin off a rhino in about 3 mins, it's perfect for drying out a soggy, rather pathetic looking man standing there in a two tone set of grey 'pyjamas' (two tone, due to the soaking wet parts and the 'just damp' parts).
The hot-air blower is a life saver, along with the electric blanket that stops the sheets from becoming freezing cold.
My sheets are covered in suspicious look white stains - I've had to explain to my cleaner, that I haven't regressed into a state of teenage hood but they are merely salt deposits that have dried out.
Honest.
Right, that's three of the four things I wanted to talk about sorted.
Let's close todays moaning session by talking about John Merrick's neck muscles.
Mr Merrick was The Elephant Man. If you haven't sent this film, then basically there is a huge whole in your life that needs filling. Go and see it, cry a lot and come back. Off you go.
Now, whist we're waiting for the Americans to catch up, the rest of you will remember that John couldn't sleep like a normal person, because he had such a heavy head that he wouldn't have got up again and it would apply so much pressure on his wind pipe, he would suffocate and die.
Well, I reckon my head is about a quarter of the size of John Merricks, although certain ex-girlfriends would swear blind it was bigger.
On Sunday night and last night, I found that The Pain wouldn't let me sleep lying down. Not on my back, not either side. Thank you God. The only thing that seems to not be causing pain, was to sit upright, with my back against the backboard, sometimes even crossed legged on the bed, as having outstretched legs seems to hurt.
This is not an idea sleeping position - unless you're Gandhi or someone else trained in the art of looking like you're meditating for hours, when really you're taking a nap, dreaming about eating giant iced-buns.
For someone like me, it's basically a, *searches for right phrase*, yes, it's a fucking drag. Yet, be sleepy enough and you can sleep in just about any position. Besides I don't 'sleep' anymore, I have a series of 10 x 40 mins naps, broken by trips to the hot-air blower, toilet, towelling sessions or fluid replacement guzzling - so a couple of 40 mins naps in an upright position is not too difficult, as I'm so shattered.
But when you wake, you will find that you are now leaning to one side and slightly forward at about a 50 degree angle, dribble is coming from your mouth but not quite reaching the duvet and your neck hurts like a bastard.
In fact, I think I could get used to sleeping upright if my neck muscles didn't hurt.
It stuck me at 4:00am how amazingly strong John Merrick's neck muscles must have been to keep that great lump upright whilst he slept. Respect John, respect.
So, I think I need to invest in a travel pillow thing. An inflatable pillow that goes around your neck and supports your head as it lolls to one side - used by aircraft passengers. This should help support my large, empty head and stop it pulling me over mattress-bound, like a thin-spring with a ball-bearing stuck on top. Tools to aid a floppy head.
Right, we've covered a lot today folks. We've covered my admission that I cannot run around Planet Earth doing the things I want to do anymore. My 'going out' social life shall be restricted to local gentle activities, minimal driving and not a lot else.
We also talked about swollen ankles, sweating and sleeping upright.
We moaned a lot.
Well, I moaned, you listened.
Here endeth the moaning.
And almost simultaneously, the listening.
I made this word up. It is a skill word.
Why do I have Mankles? It's a 'rare' side-effect of the pain-killers I am taking. It's on the biblically epic side-effect list on the leaflet in the box of the pain-killers.
What does this mean. Well, walking is now less pleasant than it was - and walking used to be pretty shit anyhow to be honest, as lumping lumps around is no fun. Walking? I need a Segway.
That's moan number one. Let's move on. There's much to get through.
I am now officially a shut-in. A 'shut-in' is an American term for people who are too fat to leave the house and have to have crisps delivered by diggers, or something. They were floral dresses because no clothes fit and eventually Jerry Springer smashes down their house so they can leave, which make for good TV, but after a while they get cold and wish they hadn't agreed to it.
OK, so I'm not filling a lot of the above criteria but I think from now on, I won't be going too far under self-propulsion. Let me explain.
Last night I witnessed an amazing football match. For 90 mins, I sat on the edge on a football pitch and saw the World Class players of Inter Milan (current European Champions), being taken apart by (relatively) new sensation Gareth Bale and his fellow team-mates. The atmosphere was electric and did somewhat embarrass Old Trafford's sometimes quiet crowd (although White Hart Lane does have the advantage of being about half the size and tightly packed-in).
OK, so this isn't a football/soccer blog - what's my point? Well, the hours either side of the 90mins were VERY tough. The journey to my friend Mark's house who took me into London, was hard. Pain gripped my left hand side and by the time I got to his house, I was angry, stressed frustrated, sickly feeling and - well - not an ideal guest.
We were slightly late, and Mark drove to the ground. I lowered the car seats to a lying-down position and was shovelling down pain-killers and sweating and not really talking. Things got a bit better as the journey continued.
We then had a walk at the other end. I'm so slow and it's only when I get 'out there' that I realise how 'out there' I am. I feel different somehow. People bump into me and walk through me, chests puffed out on the way to the 'footy'. I meekly try not to get in anyone's way and try - but fail - not to moan or talk about cancer the entire walk.
Once in the ground, Mark introduced me to all the people around me in the Season Tickets holders seats and I felt more at home. I was able to relax a bit and enjoy one of the greatest games of European football that has been played for a long time.
Then came the walk home. I was knackered. My pace was so slow. Mark was struggling to 'keep down' (I assume this is the opposite of 'keep up') and I think I was starting to annoy him. I was annoying myself.
We finally got back to his place, I grabbed my car after a quick caffeine boost and drove home, thankfully with very few cars on the road. The side-pain ever present, I made a vow to myself that I wasn't doing these nights out anymore.
No car journeys over a few miles, if I'm not feeling 100% up for it. No crowded events (gigs, etc). No situations where I HAVE to walk a distance. Obvious local shopping etc is fine, as you can just stop for coffee or go home - but no 'there's a 20 min walk at the other end' type things.
I need to stay warm, safe and near a kettle, my bed, my sofa, my toys. It's a scary world out there and whilst, of course, I will be doing stuff, I really have to limit the areas to where I will go and what I will do.
A friend who was a MacMillian nurse for kids, said to me some time ago 'We tell all parents of cancer suffers to expect every day to be hard. If you get a good day, that is a bonus'. I didn't buy this when she told me. My days were mostly good and I fought hard again the bad. The balance of power has shifted now. Most days are tough. You get good 'periods'. You don't get good 'days' anymore - not what I would call a good day. A good day is a pain-free, able-to-drive, feeling-fit, eat what you like, drink what you like and not worry about poo'ing kind of day. Those days seem far behind me.
So, I am now a shut-in. You'll find me in my flat in my lounge-wear, tinkering on the internet or with music. Where it's warm, safe, soft and ...
... damp.
Christ, I sweat a lot. A lot. I know this isn't a new thing. But it's pretty rampant now. I go to bed with towels and I wake about every hour in the night, lean over and fumble for a towel (don't open my eyes - salt water will pour in), and towel myself dry.
Then about three times a night, I will quickly slide out of bed, into my en-suit bathroom and turn on the hot-air blaster heater thing that's on the wall. An amazing device, it gets so hot that it could take the skin off a rhino in about 3 mins, it's perfect for drying out a soggy, rather pathetic looking man standing there in a two tone set of grey 'pyjamas' (two tone, due to the soaking wet parts and the 'just damp' parts).
The hot-air blower is a life saver, along with the electric blanket that stops the sheets from becoming freezing cold.
My sheets are covered in suspicious look white stains - I've had to explain to my cleaner, that I haven't regressed into a state of teenage hood but they are merely salt deposits that have dried out.
Honest.
Right, that's three of the four things I wanted to talk about sorted.
Let's close todays moaning session by talking about John Merrick's neck muscles.
Mr Merrick was The Elephant Man. If you haven't sent this film, then basically there is a huge whole in your life that needs filling. Go and see it, cry a lot and come back. Off you go.
Now, whist we're waiting for the Americans to catch up, the rest of you will remember that John couldn't sleep like a normal person, because he had such a heavy head that he wouldn't have got up again and it would apply so much pressure on his wind pipe, he would suffocate and die.
Well, I reckon my head is about a quarter of the size of John Merricks, although certain ex-girlfriends would swear blind it was bigger.
On Sunday night and last night, I found that The Pain wouldn't let me sleep lying down. Not on my back, not either side. Thank you God. The only thing that seems to not be causing pain, was to sit upright, with my back against the backboard, sometimes even crossed legged on the bed, as having outstretched legs seems to hurt.
This is not an idea sleeping position - unless you're Gandhi or someone else trained in the art of looking like you're meditating for hours, when really you're taking a nap, dreaming about eating giant iced-buns.
For someone like me, it's basically a, *searches for right phrase*, yes, it's a fucking drag. Yet, be sleepy enough and you can sleep in just about any position. Besides I don't 'sleep' anymore, I have a series of 10 x 40 mins naps, broken by trips to the hot-air blower, toilet, towelling sessions or fluid replacement guzzling - so a couple of 40 mins naps in an upright position is not too difficult, as I'm so shattered.
But when you wake, you will find that you are now leaning to one side and slightly forward at about a 50 degree angle, dribble is coming from your mouth but not quite reaching the duvet and your neck hurts like a bastard.
In fact, I think I could get used to sleeping upright if my neck muscles didn't hurt.
It stuck me at 4:00am how amazingly strong John Merrick's neck muscles must have been to keep that great lump upright whilst he slept. Respect John, respect.
So, I think I need to invest in a travel pillow thing. An inflatable pillow that goes around your neck and supports your head as it lolls to one side - used by aircraft passengers. This should help support my large, empty head and stop it pulling me over mattress-bound, like a thin-spring with a ball-bearing stuck on top. Tools to aid a floppy head.
Right, we've covered a lot today folks. We've covered my admission that I cannot run around Planet Earth doing the things I want to do anymore. My 'going out' social life shall be restricted to local gentle activities, minimal driving and not a lot else.
We also talked about swollen ankles, sweating and sleeping upright.
We moaned a lot.
Well, I moaned, you listened.
Here endeth the moaning.
And almost simultaneously, the listening.
Sunday, 31 October 2010
Simon-Non-See
Oh dear.
The best laid plans of rats and boys.
The night was painful, despite would should have been enough pain-killers to keep a horse tranquil for 8 hours.
But, neigh.
However, the side effects were effective - namely the drowsiness. So the first leg of my car journey to the seaside (my lovely car, beautifully restored, valeted, waxed and polished ...) via Surrey, was a pretty scary experience. I wasn't really in any danger as such, but I kept having mini panic-rushes, as my drowsiness kicked in - a large can of Red Bull did nothing. By the time I got to Surrey to see the folks, it was obvious I would be completely mental to drive myself to Worthing. I couldn't do it. I felt anxious and fundamentally unsafe.
I felt bad.
I know Simon understands but I hate blowing him out. Most people I'll happily blow out, especially when there's football on, but not him. Not Simon.
But, as I knew, Simon was only concerned with my safely/health/sanity and ... well ... I love you man and we'll try again after the next session. Train, ahoy.
I've seen a lot of family today - something that I now really love. No longer a duty, it's a pleasure to be with my step-dad, dad, sisters, nans recently ... I just like being around them.
Saying that, call first.
The pain is a concern. 160mg of Oxy and still pain that breaks through.
I think we know what this means.
I've just arrived back home. Another very edgy journey - but better to do it on an empty M25, than a busy Monday. The pain is back again - just necked my evening doses.
It's tough. Cancer takes and takes and takes.
It even takes my little seaside break.
Cancer is rubbish. FACT.
The best laid plans of rats and boys.
The night was painful, despite would should have been enough pain-killers to keep a horse tranquil for 8 hours.
But, neigh.
However, the side effects were effective - namely the drowsiness. So the first leg of my car journey to the seaside (my lovely car, beautifully restored, valeted, waxed and polished ...) via Surrey, was a pretty scary experience. I wasn't really in any danger as such, but I kept having mini panic-rushes, as my drowsiness kicked in - a large can of Red Bull did nothing. By the time I got to Surrey to see the folks, it was obvious I would be completely mental to drive myself to Worthing. I couldn't do it. I felt anxious and fundamentally unsafe.
I felt bad.
I know Simon understands but I hate blowing him out. Most people I'll happily blow out, especially when there's football on, but not him. Not Simon.
But, as I knew, Simon was only concerned with my safely/health/sanity and ... well ... I love you man and we'll try again after the next session. Train, ahoy.
I've seen a lot of family today - something that I now really love. No longer a duty, it's a pleasure to be with my step-dad, dad, sisters, nans recently ... I just like being around them.
Saying that, call first.
The pain is a concern. 160mg of Oxy and still pain that breaks through.
I think we know what this means.
I've just arrived back home. Another very edgy journey - but better to do it on an empty M25, than a busy Monday. The pain is back again - just necked my evening doses.
It's tough. Cancer takes and takes and takes.
It even takes my little seaside break.
Cancer is rubbish. FACT.
Friday, 29 October 2010
pain management
Happy Weekend.
Recently 'The Pain', the on-going-for-months-never-right-since-the-operations-new-tumours-in-the-spleenetic-bed pain has now turned into a full time presence.
Where we were at before was a sudden and horrendous pain attack, that a few months go, had me taking hot baths, almost crying and clutching myself in foetal positions.
More recently, I was given Oxycodon. Somewhat optimistically I was started on 5mg, 4 times a day. I accidentally started 'doubling-up' from the off, as I habitally take two of everything. So I was on 40mg a day. My nurses were cool.
This worked fine until the latest stage on The Pain. It is now a full-time background thing. It now feels like someone has punched me in the kidneys, about 5 minutes ago - a dull ache speads out from the side and comes all around the front. This is it's 'normal background state'. Then it escalates - normally every 4 hours. Other things can bring on attacks - like sitting at my work desk for a few hours without getting up and then moving and walking for a short while.
The bottom line is that just to get through the day that 10mg hit has become 20mg and I'm still in pain. I spoke to my pain-specialist and pharmacist today and she gave me some 'slow release' Oxycodone to take - 40mg in the morning and 40mg at night. They will apparently slowly release the Oxy into my body through the day. I'm them to take the fast release stuff as normal.
So I'm suddenly taking up to 160mg of Oxy a day.
I was sick this morning. The doubling-up has made me quite nauseous - I'll get used to it - but i'm now expecting another wave of it, as I've just taken my 4 x 10mg slow release evening tablets and a 10mg faster dose because, well, i'm in pain again.
Christ this stuff can make you drowsy. Proper 'fall asleep with my blackberry in my hand' stuff. And also, although I can't find this documented, for some reason, all savoury cooked food tastes like shit to me at the moment.
I got a curry in last night and threw it all away. I "made" a simple Fish Pie tonight and although I ate most of it, it had the same dead taste. I first discovered this when I got out of hospital, I warmed up a tin of baked beans to go with a pie (check out my healthy diet) and thought the beans were somehow off, so threw them out whilst cooking ... then got to the pie and threw that away too. Everything tastes really 'not right'.
Things I do like are ice-cream, Coco Pops (sugar cereals), milk and er, that's about it - oh, a tomato salad if I can get some and I did have a some nice seafood the other day. But loads of stuff just tastes rubbish - it must be something to do with the Oxy, It's the only big change in my system recently.
I've got a studio day tomorrow, off to see family Sunday (oh, my car is back - mint condition - all washed and valeted), going to stay with Simon-On-Sea (as he shall now be know) until Wednesday evening, where I am lucky enough to have a ticket to see Tottenham Hotspur (Spurs) play Inter Milan in a Champions League match. Really excited. Spurs are kinda my 'second team' but to get to see Inter play and hear the ol' Champs League music, will be great.
If you're American, you will have no idea what I'm talking about. Soccer. Biggest 'club' tourney where all the top teams in Europe compete. Trust me, it's a big deal over here. Your World Series. What a bloody misnomer 'World' is in that title, by the way.
Anyway, I'm boring myself now. Opiates and football.
I'm not going to stay awake much longer, although as I type this I'm in a mini-world of pain again. I still hate the nights - pain and sweating. Lots of sweating. As in, I go to bed with two towels. I have a really good air-blower heater in my en-suite bathroom. Comes in very handy at 3.00am, blasting with my cold damp body with warm air. Anyway ...
... see you in the morning ... night.
zzzzz
Recently 'The Pain', the on-going-for-months-never-right-since-the-operations-new-tumours-in-the-spleenetic-bed pain has now turned into a full time presence.
Where we were at before was a sudden and horrendous pain attack, that a few months go, had me taking hot baths, almost crying and clutching myself in foetal positions.
More recently, I was given Oxycodon. Somewhat optimistically I was started on 5mg, 4 times a day. I accidentally started 'doubling-up' from the off, as I habitally take two of everything. So I was on 40mg a day. My nurses were cool.
This worked fine until the latest stage on The Pain. It is now a full-time background thing. It now feels like someone has punched me in the kidneys, about 5 minutes ago - a dull ache speads out from the side and comes all around the front. This is it's 'normal background state'. Then it escalates - normally every 4 hours. Other things can bring on attacks - like sitting at my work desk for a few hours without getting up and then moving and walking for a short while.
The bottom line is that just to get through the day that 10mg hit has become 20mg and I'm still in pain. I spoke to my pain-specialist and pharmacist today and she gave me some 'slow release' Oxycodone to take - 40mg in the morning and 40mg at night. They will apparently slowly release the Oxy into my body through the day. I'm them to take the fast release stuff as normal.
So I'm suddenly taking up to 160mg of Oxy a day.
I was sick this morning. The doubling-up has made me quite nauseous - I'll get used to it - but i'm now expecting another wave of it, as I've just taken my 4 x 10mg slow release evening tablets and a 10mg faster dose because, well, i'm in pain again.
Christ this stuff can make you drowsy. Proper 'fall asleep with my blackberry in my hand' stuff. And also, although I can't find this documented, for some reason, all savoury cooked food tastes like shit to me at the moment.
I got a curry in last night and threw it all away. I "made" a simple Fish Pie tonight and although I ate most of it, it had the same dead taste. I first discovered this when I got out of hospital, I warmed up a tin of baked beans to go with a pie (check out my healthy diet) and thought the beans were somehow off, so threw them out whilst cooking ... then got to the pie and threw that away too. Everything tastes really 'not right'.
Things I do like are ice-cream, Coco Pops (sugar cereals), milk and er, that's about it - oh, a tomato salad if I can get some and I did have a some nice seafood the other day. But loads of stuff just tastes rubbish - it must be something to do with the Oxy, It's the only big change in my system recently.
I've got a studio day tomorrow, off to see family Sunday (oh, my car is back - mint condition - all washed and valeted), going to stay with Simon-On-Sea (as he shall now be know) until Wednesday evening, where I am lucky enough to have a ticket to see Tottenham Hotspur (Spurs) play Inter Milan in a Champions League match. Really excited. Spurs are kinda my 'second team' but to get to see Inter play and hear the ol' Champs League music, will be great.
If you're American, you will have no idea what I'm talking about. Soccer. Biggest 'club' tourney where all the top teams in Europe compete. Trust me, it's a big deal over here. Your World Series. What a bloody misnomer 'World' is in that title, by the way.
Anyway, I'm boring myself now. Opiates and football.
I'm not going to stay awake much longer, although as I type this I'm in a mini-world of pain again. I still hate the nights - pain and sweating. Lots of sweating. As in, I go to bed with two towels. I have a really good air-blower heater in my en-suite bathroom. Comes in very handy at 3.00am, blasting with my cold damp body with warm air. Anyway ...
... see you in the morning ... night.
zzzzz
Wednesday, 27 October 2010
time off for good behaviour
Result. Extra week off from hospital. I asked and I received. I asked because this week has been all 'worky' and I wanted an actual mini-break before I got back into solitary.
I'll go to Worthing Sunday night to stay for a few nights with me besty chum Simon to eat seeds, fish'n'chips and catch some fresh sea air.
I'll be back around Thursday, to finish off in the office and then start round 2 of the chemo.
Its not all plain sailing. I'm rough today. Had the ol' sidepain growing a lot. Sitting a work desks is not good for it. Didn't sleep so good last night but overall I'm 'stable' and looking forward to some quality time away from the usual sofa and work scene. No offence, scene.
Yip yip
Sent from my BlackBerry® 9700 wireless device
I'll go to Worthing Sunday night to stay for a few nights with me besty chum Simon to eat seeds, fish'n'chips and catch some fresh sea air.
I'll be back around Thursday, to finish off in the office and then start round 2 of the chemo.
Its not all plain sailing. I'm rough today. Had the ol' sidepain growing a lot. Sitting a work desks is not good for it. Didn't sleep so good last night but overall I'm 'stable' and looking forward to some quality time away from the usual sofa and work scene. No offence, scene.
Yip yip
Sent from my BlackBerry® 9700 wireless device
alcoholics anonymous 'chair' - 26.10.10
I gave a 'chair' last night at a North Watford meeting of Alcoholics Anonymous. A chair is a 20-30 'life story' of how AA changed a person. Usually following a simple pattern of 'what is was like', 'what I did in AA', ' what it's like now'. The aim is not to 'show off' how well you're doing, but to help the newcomer identify with the illness, the drinking stories and chaos (although everyones story is different) and hopefully realise that recovery is possible from what they see and hear in front of them.
Although not a very active member of AA recently, the group fundementally saved and then totally changed my life.
Here is the 30 min audio file for my AA friends overseas and for anyone else who is interested in listening to 'my story'.
The file is downloadable - if you are in AA and you think my chair has a message, please download and distribute to any newcomers or AA members facing illness that you feel it might help. To download - click the little black down arrow on the right of the widget and save the MP3 to your computer - as you can with most songs available on my full SoundCloud page.
Also, feel free to leave comments and 'share back' - AA'ers and non-AA'ers alike.
I hope to God I never have to go for another job interview - how publically wide-open is my life?!
Enjoy ...
AA Chair 26.10.10 by Delete All Contacts
Although not a very active member of AA recently, the group fundementally saved and then totally changed my life.
Here is the 30 min audio file for my AA friends overseas and for anyone else who is interested in listening to 'my story'.
The file is downloadable - if you are in AA and you think my chair has a message, please download and distribute to any newcomers or AA members facing illness that you feel it might help. To download - click the little black down arrow on the right of the widget and save the MP3 to your computer - as you can with most songs available on my full SoundCloud page.
Also, feel free to leave comments and 'share back' - AA'ers and non-AA'ers alike.
I hope to God I never have to go for another job interview - how publically wide-open is my life?!
Enjoy ...
AA Chair 26.10.10 by Delete All Contacts
Tuesday, 26 October 2010
options and stats
I got a call today from a, well, to be honest I can't remember what she called herself, but she works in the stem cell bone marrow department of somewhere. Or something.
She said that she wanted some more blood from to get my exact stem cell match. Or something. I explained I was back in hospital on Sunday night and where I would be and she could have as much as she wanted then, but I wasn't making the effort to go to my cancer unit just for that. She understood and is arranging for one of her blood-leaching minions to come and see me next week.
She seemed pretty clear on my case, so we had a chat. She explained things slightly differently (doesn't bloody everyone) but she seemed to know what she's talking about, so here we go.
Once I've had my 2nd E-SHAP treatment, they will take the CT/PET Scan and one of three things will happen
1. No change, enlargement or new tumour - well, that's is probably that, but we knew 'that'.
2. Near complete remission - unlikely but possible. If there is huge response then I will have the stem-call treatment but I will use my own bone marrow after the nuclear chemotherapy that destroys everything. Obviously this would be a safer procedure as there are no rejection issues.
3. If all tumours have gone into remission (some shrinkage), then I will have the same procedure but need a bone marrow donor. I really haven't read up about this yet, as I see no point but I do know it's more complex as a) you need to find a donor and b) even if you do find a match, there can be 'rejection' issues. I'm used to being rejected, so I think I'm in a good position here.
Some interesting stats
1. Globally only 10% of people who need a stem cell donor find a match
2. That's because ...
a) donating bone marrow to go on the database is bloody painful in the first place, so unlike blood the database isn't that big (more later)
b) There are very few (relative) non-white caucasian people on the register. People like myself are far more likely to find a donor, so don't let the 10% phase you too much.
However ...
The lovely lady I was speaking to said 'I do have your basic type here, because we took initial tests back in early September. We need more blood to get a more detailed match, but I can do a initial search for you to see how many people might be donors globally'
'How many people are on the database?'
'About 14 million'
'OK...run it through'
'OK, I'm showing 81 possible matches'
'Blimey'
'Well, at least that's some. Quite often I get zero'
'81 is more than zero, there is that'
-------
So there you go. Obviously I'll keep you posted with more info on this stem cell bone marrow thing should it become a viable option. I just don't want to read too much right now, as I'm trying to not project too much.
Had a brilliant day at work yesterday, really good to see everyone. Today was complete stress - the aircon unit in the server room went down AGAIN and most of my day was chewed up with that. Despite all the end-users somehow not needing a thing for three week, seem to all of sudden not be able to open documents without my help. Really weird. Anyway - reminded me of what a normal shitty days work was like.
I have just come back from speaking at AA an and I recorded in on a dictaphone. I will be presenting it on this blog for all to listen to in the next couple of days. It's about 30 mins long.
Until then ...
She said that she wanted some more blood from to get my exact stem cell match. Or something. I explained I was back in hospital on Sunday night and where I would be and she could have as much as she wanted then, but I wasn't making the effort to go to my cancer unit just for that. She understood and is arranging for one of her blood-leaching minions to come and see me next week.
She seemed pretty clear on my case, so we had a chat. She explained things slightly differently (doesn't bloody everyone) but she seemed to know what she's talking about, so here we go.
Once I've had my 2nd E-SHAP treatment, they will take the CT/PET Scan and one of three things will happen
1. No change, enlargement or new tumour - well, that's is probably that, but we knew 'that'.
2. Near complete remission - unlikely but possible. If there is huge response then I will have the stem-call treatment but I will use my own bone marrow after the nuclear chemotherapy that destroys everything. Obviously this would be a safer procedure as there are no rejection issues.
3. If all tumours have gone into remission (some shrinkage), then I will have the same procedure but need a bone marrow donor. I really haven't read up about this yet, as I see no point but I do know it's more complex as a) you need to find a donor and b) even if you do find a match, there can be 'rejection' issues. I'm used to being rejected, so I think I'm in a good position here.
Some interesting stats
1. Globally only 10% of people who need a stem cell donor find a match
2. That's because ...
a) donating bone marrow to go on the database is bloody painful in the first place, so unlike blood the database isn't that big (more later)
b) There are very few (relative) non-white caucasian people on the register. People like myself are far more likely to find a donor, so don't let the 10% phase you too much.
However ...
The lovely lady I was speaking to said 'I do have your basic type here, because we took initial tests back in early September. We need more blood to get a more detailed match, but I can do a initial search for you to see how many people might be donors globally'
'How many people are on the database?'
'About 14 million'
'OK...run it through'
'OK, I'm showing 81 possible matches'
'Blimey'
'Well, at least that's some. Quite often I get zero'
'81 is more than zero, there is that'
-------
So there you go. Obviously I'll keep you posted with more info on this stem cell bone marrow thing should it become a viable option. I just don't want to read too much right now, as I'm trying to not project too much.
Had a brilliant day at work yesterday, really good to see everyone. Today was complete stress - the aircon unit in the server room went down AGAIN and most of my day was chewed up with that. Despite all the end-users somehow not needing a thing for three week, seem to all of sudden not be able to open documents without my help. Really weird. Anyway - reminded me of what a normal shitty days work was like.
I have just come back from speaking at AA an and I recorded in on a dictaphone. I will be presenting it on this blog for all to listen to in the next couple of days. It's about 30 mins long.
Until then ...
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