Here is what I walked away from the hospital this time. Nothing slightly irritating to live with here, nothing at all.
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Wednesday, 29 September 2010
jump leads
Here is what I walked away from the hospital this time. Nothing slightly irritating to live with here, nothing at all.
Sent from my BlackBerry® 9700 wireless device
Tuesday, 28 September 2010
we apologise for the delays on the central line ...
It's done. Finally. It was horrendous.
I'm taken to theatre and confronted by a whole team of 15 people, there are lights, machines that go Bing! and lots of people telling you you're doing really well, when you've done something as impressive as roll onto your side.
The surgeon was the same chap who performed my splenectomy. Obviously I didn't get to see him during that operation as I was in la-la land. Today, however, I was awake during the whole event.
Traumatic is the word. Needles are pushed into the chest to numb the area and other nameless acts are performed, but as you've got your head turned away, your eyes clenched shut and your hand tightly gripping a nurses, your imagination is your only real reference to what is going on.
Then the cutting, pushing, pulling and grinding things happen. You can only imagine what is going on as you feel odd never-experienced-before sensations inside your chest. Some of the surgeons actions are quite forceful, pushing hard onto tubes, breaking through 'stuff' inside you.
Its a long 25 minutes. An exercise in inner meditation and numbing out. Sometimes i failed and flinched and was immediately scolded by the surgeons. Must stay still. Must not flinch.
At some point, it was over. I then spent some time in the recovery room, obsessing about food as I hadn't eaten for 19 hours.
I'm back on the ward. Opiates help take the stinging away. I have snoozed a lot. I haven't even really looked at my new toy yet. I'm just trying to be comfortable.
Next up is a double-blood transfusion, as they found out when I came in, I was horribly anaemic. That will happen overnight or tomorrow. Then a few days off before I'm back here Sunday night, so the nurses can use my new exhaust pipe to pump me full of chemo for 5 days straight.
I was hoping to do the local AA meeting chair tonight but the gods were against me (for a change) but another day I hope.
I'm going to sign off now. I hope this basic update keeps the curious satisfied until I can write a bit more sharply again. I'll try to get a photo of my new central line as well.
You'll all be wearing them next season.
I'm taken to theatre and confronted by a whole team of 15 people, there are lights, machines that go Bing! and lots of people telling you you're doing really well, when you've done something as impressive as roll onto your side.
The surgeon was the same chap who performed my splenectomy. Obviously I didn't get to see him during that operation as I was in la-la land. Today, however, I was awake during the whole event.
Traumatic is the word. Needles are pushed into the chest to numb the area and other nameless acts are performed, but as you've got your head turned away, your eyes clenched shut and your hand tightly gripping a nurses, your imagination is your only real reference to what is going on.
Then the cutting, pushing, pulling and grinding things happen. You can only imagine what is going on as you feel odd never-experienced-before sensations inside your chest. Some of the surgeons actions are quite forceful, pushing hard onto tubes, breaking through 'stuff' inside you.
Its a long 25 minutes. An exercise in inner meditation and numbing out. Sometimes i failed and flinched and was immediately scolded by the surgeons. Must stay still. Must not flinch.
At some point, it was over. I then spent some time in the recovery room, obsessing about food as I hadn't eaten for 19 hours.
I'm back on the ward. Opiates help take the stinging away. I have snoozed a lot. I haven't even really looked at my new toy yet. I'm just trying to be comfortable.
Next up is a double-blood transfusion, as they found out when I came in, I was horribly anaemic. That will happen overnight or tomorrow. Then a few days off before I'm back here Sunday night, so the nurses can use my new exhaust pipe to pump me full of chemo for 5 days straight.
I was hoping to do the local AA meeting chair tonight but the gods were against me (for a change) but another day I hope.
I'm going to sign off now. I hope this basic update keeps the curious satisfied until I can write a bit more sharply again. I'll try to get a photo of my new central line as well.
You'll all be wearing them next season.
Monday, 27 September 2010
why am I here?
I have no idea why I am here.
Here is Watford General hospital, slap-bang in the middle of a ward full of people who clearly do know why they are here.
Tomorrow I am having my Central Line administered - a procedure that I've been told will be done under local anaesthetic. And yet, I am here going through some preparation normally reserved for people who are having a general anaesthetic. Like, "nil by mouth" from midnight. I've already explained that isn't going to happen, as at the moment, due to the cancer, I am sweating a lot at night and I frequently wake with a drowning sensation, where I must have water in the same way you must have air. I have snuck myself in a bottle of water to sip. Plus it's about 45 degrees in here. If I don't drink water, by the morning I will resemble a Pot Noodle and they will have to take me to theatre on the end of the spade.
This is actually the ward I will be having my two 5 day chemo treatments in, although I have been working on the ward manager who knows me, to get me a side-room. I am becoming a known face around these parts and I think the is a certain degree of sympathy for my situation and age. I'm confident they will sort something out.
I spent most of waking day at Watford General as well. Returning big bottles of urine, which I collected on Sunday. More blood was taken and some swabs to check for MSRI. There's always something. On the plus side I got a lot more opiates.
Oh yes, opiates. Well, thank fuck for that. Painkillers that can kill pain. I was beginning to think I was asking for the impossible. I would appear that you've got to get to that 'probably hopeless' situation before they are ready to open the proper medicine cabinet.
They have a big sedative effect and take certain edges off life. My life has far too many edges, so I wont miss a few.
I am still a bit grumpy and shutting down into a bubble. I don't like being poked much. Hence, if you've tried to call in the cast few days and I haven't answered, it's because I don't want to be explaining the same sodding things over and over again. Which I seem to be doing regardless of how much groundwork I put in, or how simply I lay things out. It's me ... I have a bad attitude at the moment and I just want this sodding operation over with, so I can ... Well, so I can start dreading the return to this shithole on Sunday in peace.
The iPad is my lifesaver. I'm typing from it now and I have loaded it up with some movies, music and games to help my block out the scenes around me.
I don't know why I'm here. I won't sleep a wink. I will be in a worse state than if I came in tomorrow am. Fuck it, apparently these people know what they are doing.
Right?
Here is Watford General hospital, slap-bang in the middle of a ward full of people who clearly do know why they are here.
Tomorrow I am having my Central Line administered - a procedure that I've been told will be done under local anaesthetic. And yet, I am here going through some preparation normally reserved for people who are having a general anaesthetic. Like, "nil by mouth" from midnight. I've already explained that isn't going to happen, as at the moment, due to the cancer, I am sweating a lot at night and I frequently wake with a drowning sensation, where I must have water in the same way you must have air. I have snuck myself in a bottle of water to sip. Plus it's about 45 degrees in here. If I don't drink water, by the morning I will resemble a Pot Noodle and they will have to take me to theatre on the end of the spade.
This is actually the ward I will be having my two 5 day chemo treatments in, although I have been working on the ward manager who knows me, to get me a side-room. I am becoming a known face around these parts and I think the is a certain degree of sympathy for my situation and age. I'm confident they will sort something out.
I spent most of waking day at Watford General as well. Returning big bottles of urine, which I collected on Sunday. More blood was taken and some swabs to check for MSRI. There's always something. On the plus side I got a lot more opiates.
Oh yes, opiates. Well, thank fuck for that. Painkillers that can kill pain. I was beginning to think I was asking for the impossible. I would appear that you've got to get to that 'probably hopeless' situation before they are ready to open the proper medicine cabinet.
They have a big sedative effect and take certain edges off life. My life has far too many edges, so I wont miss a few.
I am still a bit grumpy and shutting down into a bubble. I don't like being poked much. Hence, if you've tried to call in the cast few days and I haven't answered, it's because I don't want to be explaining the same sodding things over and over again. Which I seem to be doing regardless of how much groundwork I put in, or how simply I lay things out. It's me ... I have a bad attitude at the moment and I just want this sodding operation over with, so I can ... Well, so I can start dreading the return to this shithole on Sunday in peace.
The iPad is my lifesaver. I'm typing from it now and I have loaded it up with some movies, music and games to help my block out the scenes around me.
I don't know why I'm here. I won't sleep a wink. I will be in a worse state than if I came in tomorrow am. Fuck it, apparently these people know what they are doing.
Right?
Thursday, 23 September 2010
so, what's next ... ?
I spent a few hours at the hospital today. Like you do. I may as well start renting a room over there, it would make life easier and save me a fucking fortune on parking fees.
Here's the short-term plan. Let's use a few more bullet-points. I like bullet-points. To be honest, after the week I've had, I feel like using real bullets.
I wonder if I'll every have a normal day again?
Here's the short-term plan. Let's use a few more bullet-points. I like bullet-points. To be honest, after the week I've had, I feel like using real bullets.
- On Sunday, I will be pissing into a plastic petrol-can for 24 hours. Not continuously, obviously, that would be absurd and dehydrating. But each time I need to go, I shall go into the plastic-petrol can. I will then take my plastic-can of piss and deliver it to a nice female nurse at the hospital on Monday morning. Another chip away at my crumbling wall of dignity.
- On Monday night I will be packing my overnight bag, for a stop-over at the delightful Watford General Hospital.
- On Tuesday morning, after getting no fucking sleep whatsoever due to the bedlam that exists on the ward, I will be taken to 'theatre' and have a Hickman line inserted into me. It's a plastic tube thing that's drilled into my upper chest area, so my chemo drugs can be pumped into me in the following weeks - a bit like my previous PICC line, but not in my arm, but up near my increasingly blackening heart. I've started reading about the procedure but gave up midway through the second paragraph as it was total depressing and sounds like a hideous procedure.
If you want to read about it, read about it here. I clearly have the kind of sick readership that would probably still go to Victorian freak shows if they had the chance, so knock yourself out reading the finer details of the misery I have coming up. - On the following Sunday night, I will return back to the hospital to prepare for my first 5 days of chemo-carpet-bombing treatment starting on the Monday morning. I'm staying in a shitty dump of a ward (I've been there before) and I'm just praying for a 'side-room' so I'm not staring at a collection of 80-somethings with tubes hanging out of their noses and who shit into bowls after drawing a thin blue curtain around them for 'privacy'.
- Some 'good news'. I got some better pain-killers today. They are called oxycodone hydrohloride and are of the highly addictive variety that people from Liverpool would burgle your house to get hold of. I got a little bit high off them, which is to be expected as they are an opiate. At last - a slight pleasure in my world of discomfort and pain. Of course, the downside is that they will constipate me to hell and - as I think I've realised this afternoon - make me grumpy and snappy. Sorry, make me grumpier and snappier.
They won't be able to knock out the worst pain, but they should make the general day-to-day shit a bit more bearable - just expect a slightly more lethargic, slower, washed-out version of myself. And even more grumpy when asked to do things. So, don't go ruining my buzz none, OK? You can read about my new toys here.
I wonder if I'll every have a normal day again?
Wednesday, 22 September 2010
let's not start sucking each others cocks just yet ...
I think the theme of this blog is 'expectation management' as today I have been greeted by air-punching, high-five giving, whooping and cheering friends, who probably just need a little gentle reality check ... and whilst I certainly don't want to piss on anyone's firework, I may well have to spit on a few sparklers.
(Fuck me, that was a great expression. I should write this stuff down.)
Right. Pay attention. Because I'm bored of correcting you lot and answering the same questions over and over. Read carefully. There may be an exam. There will be bullet-points.
The current situation ...
So then, I'm afraid to tell you that we are going to be playing the 'waiting for the results' game again in about 10 weeks or so. The scan results after the two treatments will mean another painful wait for you and me.
Regardless, my path to full remission is a rocky one. Two solid weeks of chemo, a toss of a coin that it works and if I'm lucky then a final 'shit or bust' treatment that will come with it's own set of scary odds (that I don't know yet).
So, dear, dear readers. Feel free to celebrate and feel happy that today I got my life sentence suspended, but know that I'm only on bail and will be appearing in front of the judge again in about 10 or so weeks.
----------------------------
Fuck me, this is one hell of abog blog,huh? Top British drama, hard-hitting and full of cliffhangers.
I suffer for my art, dear readers, to keep you entertained and engrossed - as your lives are frankly too dull to be writing about.
I hope you're all enjoying the show.
If bored, go and flip some coins ... feeling lucky?
(Fuck me, that was a great expression. I should write this stuff down.)
Right. Pay attention. Because I'm bored of correcting you lot and answering the same questions over and over. Read carefully. There may be an exam. There will be bullet-points.
The current situation ...
- My previous R-chop chemo has failed.
- It is suspected that I am showing Hodgkins and Non Hodgkins lymphoma at the same time.
- It is suspected that the Hodgkins cells are the ones that responded to chemo.
- The non-Hodgkins cells are basically chemo-resistant and will ultimately kill me if not treated.
- The Pain that I frequently talk about in my side, is not adhesions, but a new tumor growing where my spleen was.
- I have new cancer lumps in my chest and other parts of the upper body.
The plan ...
- I will have to undertake two 5 day 'in-house' chemo treatments.
- The new chemo is called R-ESHAP. You can read more about it here.
- Each treatment is performed continuously for 5 days. I will live on a ward, but not in isolation.
- After treatment One there will be a 3 week interval.
- I will then spend another 5 days in hospital having treatment Two.
- I will then wait another 3 weeks.
- Another CT/PET scan will then be taken to compare with the most recent one.
- Please understand this: R-ESHAP will NOT cure me. It is designed to hopefully put the both types of chemo into remission, so stem-cell treatment can begin. More on that in a moment.
- I will only have the Two treatments, regardless.
- There is a "40 to 50 percent chance" that R-ESHAP will reduce all types of cancer and put them into remission. Or a 50-60 chance that it will fail, if you are a glass-half-empty kind of chap.
- If the scan results fails to show a "significant reduction" in ALL cancer and tumors, then we are at the giving-up place again. There are no more options. I write a Bucket List and a killer funeral playlist.
- If it manages to put all cancer into remission then (and only then) will I start the hell of the stem-cell bone marrow treatment, which will entail either using my own or donor bone-marrow and a long and difficult procedure at a top London cancer centre - the 'boy in the bubble' treatment that I spoke of before. I have no real details on that yet, but should we get through the R-ESHAP then I will be told more.
So then, I'm afraid to tell you that we are going to be playing the 'waiting for the results' game again in about 10 weeks or so. The scan results after the two treatments will mean another painful wait for you and me.
Regardless, my path to full remission is a rocky one. Two solid weeks of chemo, a toss of a coin that it works and if I'm lucky then a final 'shit or bust' treatment that will come with it's own set of scary odds (that I don't know yet).
So, dear, dear readers. Feel free to celebrate and feel happy that today I got my life sentence suspended, but know that I'm only on bail and will be appearing in front of the judge again in about 10 or so weeks.
----------------------------
Fuck me, this is one hell of a
I suffer for my art, dear readers, to keep you entertained and engrossed - as your lives are frankly too dull to be writing about.
I hope you're all enjoying the show.
If bored, go and flip some coins ... feeling lucky?
*newsflash*
Will write more when I can but for those who are furiously pressing refresh ...
I've been thrown a life-line in the form of a new type of chemo. 2 x 5 day 'in-patient' stays. If no improvement then game over. If improvement then move on to aforementioned option a) bone-marrow stem-cell procedure.
First treatment will probably start a week on Monday.
More soon ...
Sent from my BlackBerry® 9700 wireless device
I've been thrown a life-line in the form of a new type of chemo. 2 x 5 day 'in-patient' stays. If no improvement then game over. If improvement then move on to aforementioned option a) bone-marrow stem-cell procedure.
First treatment will probably start a week on Monday.
More soon ...
Sent from my BlackBerry® 9700 wireless device
Sunday, 19 September 2010
three days and three goals later ...
Well, it's been three days since the news and as you can imagine, it's been slightly surreal. I'm sure all of you have woken up with a hangover and that nagging feeling that something bad happened last night. The first few moments of conscience are spent trying to fathom out exactly what went wrong ... And then it hits you and you sink deeper into the duvet as you remember exactly who you offended/hit/snogged/shagged/are lying next to.
Every time I fall asleep, I wake a few hours later and I go through that process. A muddiness of feeling, a wash of thinking and the crash of the reality, leaves me with with one crushing, overriding thought. That thought is "Bollocks".
The weekend has been full. Friday saw me venture out with my work colleagues, as they dealt with my news in the way they knew best. Alcohol. I left about 7 hours before they were done, which was probably ironically fitting. All sympathy, no shags.
Saturday was full of The Pain, which made things heavy going throughout, including not being able to eat the £30 curry that I had just ordered. I hate wasting food.
A little known fact: I recently invested my life savings into a cottage in a quiet part of the midlands. I hadn't actaully seen the property and finally got a chance to look around. It was a fucking surreal experience as I walked around this lovely little property that was 'mine' and something that I invested in for my future but, bleakly, was now beginning to look as useful as a set of golf clubs for a dolphin.
Sunday was good. The Pain hit me hard on our journey to Old Trafford but I was given a break by the time we got there and saw one of the best games of football I could have wished for, including a contender for 'goal of the season' right in front of our eyes. Bless you Berbatov, you made my day unforgettable.
So, I'm home again. The rest of the world prepares for another week at work. I have no idea what the fuck I am doing. All points of references are dissolving. These are the strangest days. Slowly, slowly, slowly, the reality seeps in.
More reality tomorrow.
Every time I fall asleep, I wake a few hours later and I go through that process. A muddiness of feeling, a wash of thinking and the crash of the reality, leaves me with with one crushing, overriding thought. That thought is "Bollocks".
The weekend has been full. Friday saw me venture out with my work colleagues, as they dealt with my news in the way they knew best. Alcohol. I left about 7 hours before they were done, which was probably ironically fitting. All sympathy, no shags.
Saturday was full of The Pain, which made things heavy going throughout, including not being able to eat the £30 curry that I had just ordered. I hate wasting food.
A little known fact: I recently invested my life savings into a cottage in a quiet part of the midlands. I hadn't actaully seen the property and finally got a chance to look around. It was a fucking surreal experience as I walked around this lovely little property that was 'mine' and something that I invested in for my future but, bleakly, was now beginning to look as useful as a set of golf clubs for a dolphin.
Sunday was good. The Pain hit me hard on our journey to Old Trafford but I was given a break by the time we got there and saw one of the best games of football I could have wished for, including a contender for 'goal of the season' right in front of our eyes. Bless you Berbatov, you made my day unforgettable.
So, I'm home again. The rest of the world prepares for another week at work. I have no idea what the fuck I am doing. All points of references are dissolving. These are the strangest days. Slowly, slowly, slowly, the reality seeps in.
More reality tomorrow.
Friday, 17 September 2010
fyi
"The Decision" will be told to me on Wednesday 22nd Sept @ 9:30, by a specialist at Mount Vernon. As before, it will probably take a few hours to get this information to you.
If you thought last episodes cliffhanger was a nailbiter, this one should have you chewing off your fingers.
Me? Mostly, I just have a headache.
Sent from my BlackBerry® 9700 wireless device
If you thought last episodes cliffhanger was a nailbiter, this one should have you chewing off your fingers.
Me? Mostly, I just have a headache.
Sent from my BlackBerry® 9700 wireless device
Thursday, 16 September 2010
iThanks
Its a quick one, but I feel compelled to say Thank You for all the emails, Facebook msgs, txts and hugs that i've received in the last two days.
If I haven't replied, don't take it personally, each message has been read and thought over. It's a very bizarre situation, as it almost felt like some sort of triple birthday ... All kinds of people have wished me well and for a day or so there I felt the most popular person on the planet.
Keep in contact please. It helps. I've got a hell of a mental hurdle to overcome in the coming weeks and it's going to be you guys that give me the courage to face it.
I indulged in some retail therapy today. You save a little money for a rainy day and then realize it's fucking pouring outside, so I got myself a new iPad, which is a cool little device to say the least. It'll be perfect for hospital stays and even has music creation apps.
I will write more soon but this weekend I intend to get out as much as possible. I have tickets for the Man Utd v Liverpool game on Sunday and tomorrow there is a company get together, where I shall hope to take advantage of slightly drunk, teary-eyed girls.
There's gotta be a sympathy shag or two in this somehow.
Well, you did say "if there's anything I can do..."
If I haven't replied, don't take it personally, each message has been read and thought over. It's a very bizarre situation, as it almost felt like some sort of triple birthday ... All kinds of people have wished me well and for a day or so there I felt the most popular person on the planet.
Keep in contact please. It helps. I've got a hell of a mental hurdle to overcome in the coming weeks and it's going to be you guys that give me the courage to face it.
I indulged in some retail therapy today. You save a little money for a rainy day and then realize it's fucking pouring outside, so I got myself a new iPad, which is a cool little device to say the least. It'll be perfect for hospital stays and even has music creation apps.
I will write more soon but this weekend I intend to get out as much as possible. I have tickets for the Man Utd v Liverpool game on Sunday and tomorrow there is a company get together, where I shall hope to take advantage of slightly drunk, teary-eyed girls.
There's gotta be a sympathy shag or two in this somehow.
Well, you did say "if there's anything I can do..."
Wednesday, 15 September 2010
you might want to sit down for this one ...
Somehow I'd managed to convince myself that the news was going to be good. I'm not sure why, as I've been feeling so crap for the last few weeks, but oddly for someone as miserable as myself, I still thought that the news was going to be a whole lot better than it is.
"It's not good news", she said.
I knew I was fucked right there. My doctor is a very optimistic woman. Stupidly happy. Always looking on the bright side.
I put my head in my heads. "Go on then..."
The next 5 minutes or so were hazy. Thankfully my very good friend was there to make sense of the information and what I'm now going to do is wrap it up for you in layman's terms.
In a nutshell, the cancer has spread. If the chemo has destroyed, say, 2 blobs of cancer, then 5 more have popped up around my lymphatic system.
Consequently, all chemo is now stopping, (every cloud!) as it has failed - and there is only so much one person can take (as it will ultimately kill you).
A decision is being made by some very senior consultants at 'Mount Vernon Hospital' (UK leading Cancer Centre). I was told that they will come back with one of two possible outcomes, given my current state.
a) They will perform a one-off 'nuke' of my entire body - killing off all cells. Before they do this, they remove some stem-cells. After the nuke, they reintroduce the stem-cell and hope they pick up and your body heals. I have no idea what this procedure is called - or the detail. I will know more should this decision be taken.
b) The other viable decision that may be taken, is to, er ... do nothing. As in, "there's nothing more we can do. I'm sorry" *cue sad music*
I have no more real information than that ... it's now wait a few days to see what they come back with.
Sorry to depress you, my dear readers, by that is the nature of cancer sadly. Cancer is basically, very rubbish.
As you can imagine, I'm fielding a lot of questions and tears back here at work and on the ol' Blackberry. I'll happily give anyone a hug who feels like they need one.
I'll post more in the next few days.
Keep smiling x
"It's not good news", she said.
I knew I was fucked right there. My doctor is a very optimistic woman. Stupidly happy. Always looking on the bright side.
I put my head in my heads. "Go on then..."
The next 5 minutes or so were hazy. Thankfully my very good friend was there to make sense of the information and what I'm now going to do is wrap it up for you in layman's terms.
In a nutshell, the cancer has spread. If the chemo has destroyed, say, 2 blobs of cancer, then 5 more have popped up around my lymphatic system.
Consequently, all chemo is now stopping, (every cloud!) as it has failed - and there is only so much one person can take (as it will ultimately kill you).
A decision is being made by some very senior consultants at 'Mount Vernon Hospital' (UK leading Cancer Centre). I was told that they will come back with one of two possible outcomes, given my current state.
a) They will perform a one-off 'nuke' of my entire body - killing off all cells. Before they do this, they remove some stem-cells. After the nuke, they reintroduce the stem-cell and hope they pick up and your body heals. I have no idea what this procedure is called - or the detail. I will know more should this decision be taken.
b) The other viable decision that may be taken, is to, er ... do nothing. As in, "there's nothing more we can do. I'm sorry" *cue sad music*
I have no more real information than that ... it's now wait a few days to see what they come back with.
Sorry to depress you, my dear readers, by that is the nature of cancer sadly. Cancer is basically, very rubbish.
As you can imagine, I'm fielding a lot of questions and tears back here at work and on the ol' Blackberry. I'll happily give anyone a hug who feels like they need one.
I'll post more in the next few days.
Keep smiling x
Tuesday, 14 September 2010
Results tomorrow ...
... 9am.
Stay tuned rubberneckers.
Sent from my BlackBerry® 9700 wireless device
Stay tuned rubberneckers.
Sent from my BlackBerry® 9700 wireless device
Sunday, 5 September 2010
whilst you are waiting ... some music
Finally, as I shake off the lethargy, I am able to create some music again.
Here's my latest output, a song cunningly called 'Deleting All Contacts' (my artist name is 'Delete All Contacts').
Despite promises to the world to not do so, I have sung again on this track. I am sorry.
It might pass the time, whilst I put you hold waiting for my scan results.
Please wait caller ...
Delete All Contacts Sampler by Delete All Contacts
Here's my latest output, a song cunningly called 'Deleting All Contacts' (my artist name is 'Delete All Contacts').
Despite promises to the world to not do so, I have sung again on this track. I am sorry.
It might pass the time, whilst I put you hold waiting for my scan results.
Please wait caller ...
Delete All Contacts Sampler by Delete All Contacts
Thursday, 2 September 2010
... 4 days off
(part 2 of a 2 part blog)
Monday morning.
I wake up, I visit the bathroom, I collapse back on the bed. Something is not right. I fall back asleep.
A short while later, I get up, stumble into the kitchen and fall over the pile of dirty clothes I cunningly left myself on the kitchen floor to remind myself to wash. I stuff them into the machine, press a few button and collapse back into bed. This isn't good. I feel awful.
And feeling awful has been the non-stop focal point of every waking hour since Monday am. Dreadful. Wiped out. Zonked. Zero energy. No appetite. No desire. No bloody music making, that's for sure.
I had a huge sleeping episode recently and although this could be lumbered in with that, this was a lot worse. The sleeping episode was just that really. A lot of sleep. This was feeling horrible on top and getting any solid sleep was hard. In and out, trippy dreams, feeling increasingly sorry myself and stupidly miserable.
Any hope that 'back to work day' on Tuesday would be better, were smashed within a waking second. No improvement. I cancelled my PET/CT scan appointment that I was suppose to have that day. Helpfully they said I could come in on the following day in the afternoon. I feel back asleep. In and out, trippy dreams, feeling increasingly sorry for myself and stupidly, stupidly miserable.
At a few points during Tuesday I made it to the Chemo Couch and tried to find something to cheer me up. I found the BBC website with the footage of the Reading Festival, something I used to attend pretty regularly in my 20's. An old favourite of mine, Limp Bizkit had reformed and I decided to watch the show. I think I must be the first person in history to burst into tears at watching Limp Bizkit play live.
As I watched the 'mosh pit', the sunsoaked revellers enjoying themselves, the memories came flooding back of the times I was in that circle pit, shirt off, leaping from body to body, charged up on energy and adrenalin - suddenly my pathetic body had never seemed so pitiful. By comparison, my mission today was to get a tin of peaches and some ice-cream from the local shop. That would be my feat of physical impressiveness, rather than a 90 minute slam-dancing session in the middle of a hot field. My self-pity reached new depths. I couldn't do anything, except sit or lie. It hurts to take a shit, for fucks sake. Truly pathetic.
Wednesday came around. I had to get up. I had to. Today, I was booked in for 'clinic' at my local hospital in the morning. Clinic is 'blood test' and mini-consultation once results are through (about an hour) to check if you're good to go for chemo the following day. After clinic, I would need to drive over the main cancer hospital for another CT/PET scan. That's the one where they make you radioactive - regular readers might remember this.
Getting up and dressed took about an hour. You can put one sock on and pause, drift away, stare into space. Knackered. After 5 minutes you'll put on another sock. Every time you pass a chair, you will sit. If you pass the sofa, you will lie. On top of this, I am not allowed to eat until after my afternoon scan. I am hungry. I won't be eating until about 2:00pm. Bah.
Somehow I drive to Clinic and do the waiting thing. I moan a lot in clinic about how shitty I feel, but ultimately, they do not care, for my blood test is not showing anything too critical and the more important issue is to get the scan done and results back. The results from this scan will show how well I have responded to the treatment and how much more, if any, I am to have.
Then - some amazing news ... casually, in passing, my doctor says, "there's no point you having chemo tomorrow...we'll wait for the scan results". The words from heaven flowed from her lips. "No chemo tomorrow". I feel better already. OH GOD, THANK YOU, THANK YOU!!. Some respite. In my current condition, you can imagine how much I was looking forward to another pounding with the very shitty chemo-stick.
As I walked out of that hospital towards another, I felt slightly better and noticed my pace was a bit quicker. However, I am still hungry.
So then. Back to the ol' PET/CT scan. I've covered this already, but in a nutshell, you turn up, get injected with some radioactive magic monkey juice, you wait 25 mins whilst drinking some water, you then get put into one of those long tube machines that cost a fucking fortune and about 30 mins later, out the other end will pop a picture of your insides - with all the nasty cancer stuff lighting up like glow sticks at a rave. These images will eventually be pondered over by some clever people and send back to my doctor, where I will be called in and told if it's time to start making holiday or funeral arrangements.
Inside the tube, I fall asleep. This is pretty impressive. Most people are intimidated by the whirling piece of NASA type technology that covers your head and torso. But I was so shattered that I lay down and bingo! - nap time. The 25 min scan session was over in a heartbeat.
I am rudely awakened by a junior lab-rat, who shows me the door.
After the scan, I find the hospital snack-shop. I sit in my car and tuck into my fast breaking healthy lunch of ice-cream, chocolate, crisps and fizzy drink. SUGGGGGGGGGGGGGGAAAAAAAR RRRRRRRUUUUUUUSH!
Home again. Flop into bed. I did it. I did it. I did it. Sleep.
-----------
Today: Oh for fucks sake. Surely I should be better now! *sneeze*. Fuck it, i'm going to work anyhow. *sneeze*
I make it to the office at about 11:00am. I am dripping snot out my nose and sneezing regularly. I am drinking Lemsips and ... praise Allah ... I am feeling better. My work output is as pathetic as my body but just being here, plugged back into the system, talking to people, helping out a bit ... hour by hour, I'm returning to 'self'. It feels good to be back.
Conclusion: There is very little wrong with me to worry about. I probably have picked up what you lot get every other month - a cold, a bug, Man Flu, whatever you call it ... however, with an immune system that is as effective at fighting as the French Navy, I am floored by the smallest of germs. Pathetic.
It's been a really hard few days for some reason. It's certainly not been the first episode that I've been racked up in bed for a few days, but each time, it gets harder mentally. I am tired. I am tired of the downs. I am tired of chemo. I am tired of having to explain how I feel. I am tired of blogging about how tired I am of ... etc.
So, the wait is on then. The wait for the scan results. The results that dictate my immediate and possibly long term future. If I'm honest, I couldn't actually give a shit about the cancer, I just want the chemo to stop. I think I'm getting the cart before the horse there, but it's how I feel.
However, if you're so inclined, pray. Pray that in a week's time, I will be posting happy news about my scan results.
If, like our good friend Steven Hawkins, you've decided God doesn't exist, then send positive thoughts my way anyway.
Because ...
Because I really, really need a break from this. My body wants some uninterrupted healing time. I want to be able to get a few weeks of good times back. I was going to write that I want to run, to dive, to mosh in pits ... but to be honest, I just want to be able to eat, to shit and to go to work. I want to be a bit bored with the same ol', same ol'. I want things to be predictable. To be stuck in a routine. To be grinding out the weeks. To be, well, normal.
Most of all, I want the old me back.
-----------
Special thanks for M. for bringing me food supplies and listening to me moan. You saved my life. Probably.
-----------
Footnote: I'll post the results of my scan on this blog. I may need to talk to few people first, face to face (or by phone) but rest assured, you'll know not long after I do.
Until then, consider this an end of series cliffhanger ...
Monday morning.
I wake up, I visit the bathroom, I collapse back on the bed. Something is not right. I fall back asleep.
A short while later, I get up, stumble into the kitchen and fall over the pile of dirty clothes I cunningly left myself on the kitchen floor to remind myself to wash. I stuff them into the machine, press a few button and collapse back into bed. This isn't good. I feel awful.
And feeling awful has been the non-stop focal point of every waking hour since Monday am. Dreadful. Wiped out. Zonked. Zero energy. No appetite. No desire. No bloody music making, that's for sure.
I had a huge sleeping episode recently and although this could be lumbered in with that, this was a lot worse. The sleeping episode was just that really. A lot of sleep. This was feeling horrible on top and getting any solid sleep was hard. In and out, trippy dreams, feeling increasingly sorry myself and stupidly miserable.
Any hope that 'back to work day' on Tuesday would be better, were smashed within a waking second. No improvement. I cancelled my PET/CT scan appointment that I was suppose to have that day. Helpfully they said I could come in on the following day in the afternoon. I feel back asleep. In and out, trippy dreams, feeling increasingly sorry for myself and stupidly, stupidly miserable.
At a few points during Tuesday I made it to the Chemo Couch and tried to find something to cheer me up. I found the BBC website with the footage of the Reading Festival, something I used to attend pretty regularly in my 20's. An old favourite of mine, Limp Bizkit had reformed and I decided to watch the show. I think I must be the first person in history to burst into tears at watching Limp Bizkit play live.
As I watched the 'mosh pit', the sunsoaked revellers enjoying themselves, the memories came flooding back of the times I was in that circle pit, shirt off, leaping from body to body, charged up on energy and adrenalin - suddenly my pathetic body had never seemed so pitiful. By comparison, my mission today was to get a tin of peaches and some ice-cream from the local shop. That would be my feat of physical impressiveness, rather than a 90 minute slam-dancing session in the middle of a hot field. My self-pity reached new depths. I couldn't do anything, except sit or lie. It hurts to take a shit, for fucks sake. Truly pathetic.
Wednesday came around. I had to get up. I had to. Today, I was booked in for 'clinic' at my local hospital in the morning. Clinic is 'blood test' and mini-consultation once results are through (about an hour) to check if you're good to go for chemo the following day. After clinic, I would need to drive over the main cancer hospital for another CT/PET scan. That's the one where they make you radioactive - regular readers might remember this.
Getting up and dressed took about an hour. You can put one sock on and pause, drift away, stare into space. Knackered. After 5 minutes you'll put on another sock. Every time you pass a chair, you will sit. If you pass the sofa, you will lie. On top of this, I am not allowed to eat until after my afternoon scan. I am hungry. I won't be eating until about 2:00pm. Bah.
Somehow I drive to Clinic and do the waiting thing. I moan a lot in clinic about how shitty I feel, but ultimately, they do not care, for my blood test is not showing anything too critical and the more important issue is to get the scan done and results back. The results from this scan will show how well I have responded to the treatment and how much more, if any, I am to have.
Then - some amazing news ... casually, in passing, my doctor says, "there's no point you having chemo tomorrow...we'll wait for the scan results". The words from heaven flowed from her lips. "No chemo tomorrow". I feel better already. OH GOD, THANK YOU, THANK YOU!!. Some respite. In my current condition, you can imagine how much I was looking forward to another pounding with the very shitty chemo-stick.
As I walked out of that hospital towards another, I felt slightly better and noticed my pace was a bit quicker. However, I am still hungry.
So then. Back to the ol' PET/CT scan. I've covered this already, but in a nutshell, you turn up, get injected with some radioactive magic monkey juice, you wait 25 mins whilst drinking some water, you then get put into one of those long tube machines that cost a fucking fortune and about 30 mins later, out the other end will pop a picture of your insides - with all the nasty cancer stuff lighting up like glow sticks at a rave. These images will eventually be pondered over by some clever people and send back to my doctor, where I will be called in and told if it's time to start making holiday or funeral arrangements.
Inside the tube, I fall asleep. This is pretty impressive. Most people are intimidated by the whirling piece of NASA type technology that covers your head and torso. But I was so shattered that I lay down and bingo! - nap time. The 25 min scan session was over in a heartbeat.
I am rudely awakened by a junior lab-rat, who shows me the door.
After the scan, I find the hospital snack-shop. I sit in my car and tuck into my fast breaking healthy lunch of ice-cream, chocolate, crisps and fizzy drink. SUGGGGGGGGGGGGGGAAAAAAAR RRRRRRRUUUUUUUSH!
Home again. Flop into bed. I did it. I did it. I did it. Sleep.
-----------
Today: Oh for fucks sake. Surely I should be better now! *sneeze*. Fuck it, i'm going to work anyhow. *sneeze*
I make it to the office at about 11:00am. I am dripping snot out my nose and sneezing regularly. I am drinking Lemsips and ... praise Allah ... I am feeling better. My work output is as pathetic as my body but just being here, plugged back into the system, talking to people, helping out a bit ... hour by hour, I'm returning to 'self'. It feels good to be back.
Conclusion: There is very little wrong with me to worry about. I probably have picked up what you lot get every other month - a cold, a bug, Man Flu, whatever you call it ... however, with an immune system that is as effective at fighting as the French Navy, I am floored by the smallest of germs. Pathetic.
It's been a really hard few days for some reason. It's certainly not been the first episode that I've been racked up in bed for a few days, but each time, it gets harder mentally. I am tired. I am tired of the downs. I am tired of chemo. I am tired of having to explain how I feel. I am tired of blogging about how tired I am of ... etc.
So, the wait is on then. The wait for the scan results. The results that dictate my immediate and possibly long term future. If I'm honest, I couldn't actually give a shit about the cancer, I just want the chemo to stop. I think I'm getting the cart before the horse there, but it's how I feel.
However, if you're so inclined, pray. Pray that in a week's time, I will be posting happy news about my scan results.
If, like our good friend Steven Hawkins, you've decided God doesn't exist, then send positive thoughts my way anyway.
Because ...
Because I really, really need a break from this. My body wants some uninterrupted healing time. I want to be able to get a few weeks of good times back. I was going to write that I want to run, to dive, to mosh in pits ... but to be honest, I just want to be able to eat, to shit and to go to work. I want to be a bit bored with the same ol', same ol'. I want things to be predictable. To be stuck in a routine. To be grinding out the weeks. To be, well, normal.
Most of all, I want the old me back.
-----------
Special thanks for M. for bringing me food supplies and listening to me moan. You saved my life. Probably.
-----------
Footnote: I'll post the results of my scan on this blog. I may need to talk to few people first, face to face (or by phone) but rest assured, you'll know not long after I do.
Until then, consider this an end of series cliffhanger ...
Wednesday, 1 September 2010
4 days on ...
(part 1 of 2 part blog)
My memory is hazy. I am writing this from The Chemo Couch (my sofa), where I seem to have spent 75% of my waking life this year. I ache and I am tired. I am tired despite spending Monday and Tuesday in bed. I have no clever name for my bed. It is just 'bed'. And I'm beginning to loathe bed as much as The Chemo Couch.
Rewind.
I can remember last Thursday. I got my energy and 'life' back after feeling lethargic for a while. The days are blurred and I can't be too sure of the exact timing, but I do remember that come Friday, whilst the rest of the office rushed out the door at 4:01pm for the early break and the three day weekend here in the UK, I was happily engrossed in some coding and worked on later into the evening, feeling good about myself - remembering what it was I did for living and feeling like I was making a positive contribution, rather than being a passenger at the workplace.
My mood had been further buoyed by the fact that a rather lovely person in the office gave me the opportunity to have a pair of free tickets to see my beloved Manchester United ('soccer', my overseas readers!) at their home ground, Old Trafford the next day. A result.
I live on the northern outskirts of London. Manchester is 175 miles north. So that's a 350 mile round trip in a day. I remember 'thinking twice' about driving. Was it stupid of me put myself in this situation? My 'daily pain' was still strong, so I knew I would be taking plenty of painkillers. But on the day, I couldn't see the harm. My car is comfortable, safe, fast, automatic and driving had never really been too much trouble for me. The friend I was taking would understand if I had to pull over for a while. Large cans of Red Bull and a feel-good-feeling, ensured that I would be OK.
Actually, we hit a lot of traffic and everything was nearly a disaster, but thanks to some determined wills and a parking attended sent from heaven, who parked our car and drove us the final mile to the ground, saving us missing the entire first half. As it was, we missed 10 mins.
Not a real problem, as our team won 3-0 and the drive home was a brilliantly clear motorway, where I got our time down from 4.5 hrs to 3 hrs. A great day.
The following day, I woke at 11:00am. Hastily dressed, I met a friend and we caught a train into London, where we saw 'Avatar' in 3D at the iMax. It was her 'first time' in 3D and I never get bored of seeing that film on the big, big, big screen. After a meal out, I returned home. It had been a good weekend and I was looking forward to the official day off, Bank Holiday Monday, to get some washing done but more importantly, I had a burning desire to finish off a song I had been working on.
I called home. My step-dad wanted me to come down on Monday for a day out. I called to confirm that wasn't going to happen. I was tired. Happy, content but very tired. I just wanted to sleep and then take the next day to charge my batteries, relax and make some music.
God had others plans.
My memory is hazy. I am writing this from The Chemo Couch (my sofa), where I seem to have spent 75% of my waking life this year. I ache and I am tired. I am tired despite spending Monday and Tuesday in bed. I have no clever name for my bed. It is just 'bed'. And I'm beginning to loathe bed as much as The Chemo Couch.
Rewind.
I can remember last Thursday. I got my energy and 'life' back after feeling lethargic for a while. The days are blurred and I can't be too sure of the exact timing, but I do remember that come Friday, whilst the rest of the office rushed out the door at 4:01pm for the early break and the three day weekend here in the UK, I was happily engrossed in some coding and worked on later into the evening, feeling good about myself - remembering what it was I did for living and feeling like I was making a positive contribution, rather than being a passenger at the workplace.
My mood had been further buoyed by the fact that a rather lovely person in the office gave me the opportunity to have a pair of free tickets to see my beloved Manchester United ('soccer', my overseas readers!) at their home ground, Old Trafford the next day. A result.
I live on the northern outskirts of London. Manchester is 175 miles north. So that's a 350 mile round trip in a day. I remember 'thinking twice' about driving. Was it stupid of me put myself in this situation? My 'daily pain' was still strong, so I knew I would be taking plenty of painkillers. But on the day, I couldn't see the harm. My car is comfortable, safe, fast, automatic and driving had never really been too much trouble for me. The friend I was taking would understand if I had to pull over for a while. Large cans of Red Bull and a feel-good-feeling, ensured that I would be OK.
Actually, we hit a lot of traffic and everything was nearly a disaster, but thanks to some determined wills and a parking attended sent from heaven, who parked our car and drove us the final mile to the ground, saving us missing the entire first half. As it was, we missed 10 mins.
Not a real problem, as our team won 3-0 and the drive home was a brilliantly clear motorway, where I got our time down from 4.5 hrs to 3 hrs. A great day.
The following day, I woke at 11:00am. Hastily dressed, I met a friend and we caught a train into London, where we saw 'Avatar' in 3D at the iMax. It was her 'first time' in 3D and I never get bored of seeing that film on the big, big, big screen. After a meal out, I returned home. It had been a good weekend and I was looking forward to the official day off, Bank Holiday Monday, to get some washing done but more importantly, I had a burning desire to finish off a song I had been working on.
I called home. My step-dad wanted me to come down on Monday for a day out. I called to confirm that wasn't going to happen. I was tired. Happy, content but very tired. I just wanted to sleep and then take the next day to charge my batteries, relax and make some music.
God had others plans.
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