tag:blogger.com,1999:blog-25476127530185390232024-03-19T11:20:26.572+00:00The Kemo KidCancer is rubbish.Unknownnoreply@blogger.comBlogger174125tag:blogger.com,1999:blog-2547612753018539023.post-17603855390987188012010-12-15T14:49:00.002+00:002010-12-15T14:49:16.284+00:00The EndAs many of you may know, Spencer passed away at 12:40 in the afternoon of the 5th December 2010, at The Peace Hospice in Watford. His passing was peaceful and he was not alone - his father, his closest friend John and his favourite nurse were all with him. It seems obvious to say that he will be sadly missed by many people - both Facebook and this blog show clearly how much he was loved and respected.<br />
<br />
A memorial service will be held at 1:20pm next Monday, the 20th December at West Herts Crematorium, High Elms Lane, Garston, Hertfordshire, WD25 0JS. This will be followed by a gathering for friends, family and colleagues at Bar Bodega, 151 The Parade, Watford, WD17 1NA. There is no formal dress code but please let your attire show Spence that you made an effort for him.<br />
<br />
Please do not send any flowers - that money could be used in a much more lasting way. Any charitable contributions are considered to be private but we would prefer that any donations be made to either The Peace Hospice or Cancer Research UK. The Peace Hospice was responsible for giving Spence a fantastic amount of love and support in his last few weeks. He could not have spent his remaining time in a more special, caring and peaceful place.<br />
<br />
Hot and cold food and drinks will be provided at Bar Bodega, courtesy of Spencer and John. We will be making a collection for The Peace Hospice there and any contributions will be warmly received. Free car parking for Bar Bodega will be available a short walk away at 44 Clarendon Road, Watford.<br />
<br />
Please join us. Not in mourning Spence's death but in celebrating his life and the many and varied contributions he made to everybody who knew him. <br />
<br />
Please remember that Spence found sobriety in the last 9 years and, even in his darkest moments over the last year, stoically maintained sobriety. If you wish to raise a glass or two to him then please do so. However we do understand that some of Spence's friends enjoy similar sobriety and we would ask that they find similar strengths to join us for the afternoon. It's all too easy at these times to seek to blot out the pain, Spencer wouldn't have wanted that.Unknownnoreply@blogger.com13tag:blogger.com,1999:blog-2547612753018539023.post-63169808767210012862010-11-24T21:02:00.000+00:002010-11-24T21:00:39.529+00:00clocking inI am literally clocking in to say "Not Dead Yet", as my inbox suggests you need to know this. I've got some time yet. Chill out. All those that really need to see will get to see me in good time.<p>The Peace Hospice crew are trying to get me permanent funding in this Hospice, or else it may be at another nursing home place (which I don't want). The bottom line is that the lovely crew here are in agreement that my home is not an option, as I need too much care and I think they would love me to be able to see my days out here. But there are people who clutch chequebooks who need convincing, who don't know me and I, to them, am just a name on a piece of paper. <p>Speaking of 'home', I have gone back to the flat to pick up a few things this afternoon and try to sort myself to attempt to do some work done. You will not believe how much energy it takes to get up and about. I hate being out, its too much - its depressing, painful and, well, ... can't explain but just a car journey or a flight of stairs fucks me, physically and emotionally, as you feel how detatched, different and weak you really are. <p>And in regard to 'work', well my remit is to somehow dump 14 years worth of data that's in my brain out into a understandable-for-someone-else format. My best friend has been up to support me today, but it still ended with very little actually done and many real tears of frustration and sadness ... thankfully my best-friend does good best-friend hugs. <p>So, I'm pleased to be back at my Hospice (like I never want to leave this room again!), but I worried. I'm worried I won't get a permanent placement here - its really a hospice for the short-term terminal and I've got a few months, I think. Everyone here seems to be fighting for me, so let's hope. I'm due a bit of "luck" and having a room here until 'The Bitter End', is all I'm asking for. <p>The thought of life in an inferior nursing home, or having to install hospital beds and nurses into my flat just seems horrendous after spending time here. Like everything in my so-called-life in the last 12 months, we'll just have to wait and see ...<p>I haven't blogged much about my day-to-day routine and it's because there's too much detail to go into and I am just sick to death of talking or explaining about it. Just assume that everything is hard bloody work but everyone here is amazing and kind and all that can be done is being done ...<p>The only way I felt I got close to summing up my feelings, was by saying to someone that "it is now my full time job to wake up, minimise pain and get back to sleep". Its my job just to live. Anything on top is a bonus. <p>I'm frustrated. I'm tearful and I don't want to write this sodding blog but with hundreds of well-wishing friends, family and near-total-strangers emailing me, its a duty that I need to do. <p>Bad mood. Sorry. I'm "OK" just stressed about work and future of the Hospice. I'm sure you can understand. I<p>This blog in unlikely to be updated as much now, ironically, when there is the most to write about, but, well ... You've had nearly a years worth of free content out of me and ...<p>Night. <br>
<br>Sent from my BlackBerry® 9700 wireless deviceUnknownnoreply@blogger.com25tag:blogger.com,1999:blog-2547612753018539023.post-36903648539907095242010-11-20T10:16:00.001+00:002010-11-20T10:20:37.755+00:00"thank you for calling us today. your call is very important to us. please hold."Unfortunately our call-logging system is under heavy strain and has come to a crashing halt.<br />
<br />
-----------<br />
<br />
I can't write very much at the moment, as I fall asleep. I'm very heavily medicated writing anything just pulls me into Mr Snoozy World. When it comes to the quick email/txts on the Blackberry, I get double-vision and a simple two line reply becomes a headache.<br />
<br />
However, this morning, I've taken this rare window of opportunity of 'a tad of energy' to state that ...<br />
<br />
1. I've read every txt, email, Facebook message and letter that has been sent. <br />
2. I've listened to every voice mail<br />
<br />
However, I will not be able to reply to hardly any of them, due to low energy and the fact that there is just too much to go into with certain people.<br />
<br />
What I need to do is to try to update the blog to tell you what's going on but again, the above apply. <br />
<br />
I need a PA. <br />
<br />
But in the absence of that ...<br />
<br />
1. I am in a Peace Hospice in Watford - I am happy here (relative)<br />
2. I will be sent home in a the coming week<br />
3. I have a 'family meeting' on Tuesday where we will be told of the plan<br />
4. I have been looked after amazingly, but there have been some tough times - lots of opportunities for tales about lack of sleep, sleeping non-stop when you don't want to, nightmares, night-sweats, tablets the size of rodents, constipation from hell ... all the kind of things I normally can draw out into a separate blog entry ... but now I'm on 'the other side', it hardly seems worth mentioning somehow. <br />
5. I rarely want to see people - not personal, but the snoozing and lack of 'hey, it's me!', make it hard to be entertaining. I fall asleep on my guests, walking up 3 minutes later, talking shit. Also, guests want to talk about my illness all the time and I would much prefer it if we could about something else. I mean, sure, it's gonna come up and I will talk about it, but I like it when people bring me tales and gossip from the outside world.<br />
<br />
I am snoozing more as I write this. There is a ton of new medical stuff I could tell you - lots of interesting new procedures and boxes that I have strapped to me, but I don't have the energy today.<br />
<br />
After all, this blog is really just to say that I'm reading all your message of love, that they are appreciated and I'm sorry it's one-way traffic at the moment.<br />
<br />
Love you all.<br />
<br />
-----------<br />
<br />
(oh, if you were having trouble viewing my weepy video above, it should now be fixed)Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-2547612753018539023.post-67383808737310789092010-11-12T15:42:00.002+00:002010-11-18T11:06:25.106+00:00the hardest part of this, is leaving youDear, dear readers.<br />
<br />
What can I say? Take a seat, please.<br />
<br />
For I have the news that no-one here wanted to here. <br />
<br />
It's the end of the battle, the end of the war and I'm sorry to say I am defeated and all hope is lost.<br />
<br />
I have been given "a few months" to live.<br />
<br />
There is no more treatments to offer, no more 'we could tries'. It is, at last, over.<br />
<br />
I have been moved from the bedlam that is Watford General, to the peace of the Watford Peace Hospice, where I shall be staying for a week or so. It's a beautiful place, with lovely 'rooms' (no wards), all with en-suit and even wi-fi. It's a great place - the relaxation and facilities of a nice hotel, with the 24/7 on-call medical team at the touch of a button.<br />
<br />
I'm going to leave you now, in some cases with a hundred questions you want answered, but for now, that is all. <br />
<br />
I am not really taking calls or answering emails or txts ... it's just too much at the moment. My head is somewhat spinning and I am tired. A few days here, of proper rest, some talking-therapy and some adjustment time and I know I will be much more at ease with what is happening.<br />
<br />
It's been about 24 hours since I found out and it feels like 7 days.<br />
<br />
I'm going to leave you with a song. It's a song I've always liked, from a band I've always liked. It says just about everything I need to say right now. <br />
<br />
When all is said and done, the hardest part of all of this, is leaving you.<br />
<br />
<br />
<object height="385" width="480"><param name="movie" value="http://www.youtube.com/v/UJu8ReaxFNA?fs=1&hl=en_GB"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/UJu8ReaxFNA?fs=1&hl=en_GB" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object>Unknownnoreply@blogger.com9tag:blogger.com,1999:blog-2547612753018539023.post-53423478281499964942010-11-09T11:59:00.000+00:002010-11-09T11:58:08.904+00:00PET/CT scanI've having a scan today. There will be a delay until I get the results.
<br>
<br>Please do not ask me 'if I've heard...' or 'how did it go'.
<br>
<br>Again, depending on results it may take a while before I can 'go public', as there are people I will need to speak to.
<br>
<br>I know you mean well and its appreciated but you'll know when it's time for you to know.
<br>
<br>Much love
<br>
<br>
<br>Sent from my BlackBerry® 9700 wireless deviceUnknownnoreply@blogger.com0tag:blogger.com,1999:blog-2547612753018539023.post-23434901151420504822010-11-05T19:44:00.002+00:002010-11-05T19:58:58.798+00:00R-ESHAP Session 2 delay ..I really, really can't type much. I'm falling asleep.<br />
<br />
But a frustrating experience with Mrs Doctor today, resulted in me not going back to hospital on Sunday to have the 2nd R-ESHAP session, but to go to be 'urgently fast-tracked' through a CT/PET scan session. <br />
<br />
So, another 'radioactive' internal image scan ... to find out what difference there has been so far. Remember, we were not going to be doing this until after TWO sessions of R-ESHAP.<br />
<br />
Why suddenly change the routine? Well, because my pain-killers are going though the roof (I started on 'no more than 40mg a day' to my latest instructions of '4 x 20mg 'fast release' Oxy and 2 x 80mg 'slow release' Oxy tablets. (Total: 240mg a day). For the record, I've never taken any more than I've been advised to by my medical team. I always explain what's going on.<br />
<br />
Also, I feel like crap most of the time, my sleeping is fucked due to background pain and ... fuck me, how many times have you read this tirade. But to sum up, they are concerned that I've had no real relief from the last R-ESHAP treatment. I have my private thoughts on this but will keep my mouth shut for a week.<br />
<br />
Finally, the Mrs Doctor and lovely my Key Worker agreed that I looked like a bag of shite, although I'm paraphrasing ever-so slightly.<br />
<br />
So, apparently I'll get a call on Monday to arrange my photo-shoot on Tuesday. Due to this fast-track, I should know 'something' soon. They said the results will be accessible the next day. Let's call it Friday then.<br />
<br />
All bar the slightly angry conversations and minor details, you're basically up-to-date with where I am.<br />
<br />
Can't write any more. Too snoozy. More soon.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2547612753018539023.post-43094968805625692512010-11-04T08:33:00.005+00:002010-11-04T09:15:48.485+00:00Kemo-Kouch<p class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxmgISC5Ey0w-fZR9qgfP9WTV_Y8-V9Zuxfm-zo_EC9uj0zMOXivK4q37Zwn0m4MVldnx6-j8Co0yZrth-BFbz6pXuuxgo2YPKI9QwfGSlXmen6fkYPz4nobPUcwg88NAouCae4e44Ct8w/s1600/=%3Futf-8%3FB%3FSU1HMDAxOTQtMjAxMDExMDMtMjAzMC5qcGc=%3F=-715255"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxmgISC5Ey0w-fZR9qgfP9WTV_Y8-V9Zuxfm-zo_EC9uj0zMOXivK4q37Zwn0m4MVldnx6-j8Co0yZrth-BFbz6pXuuxgo2YPKI9QwfGSlXmen6fkYPz4nobPUcwg88NAouCae4e44Ct8w/s320/=%3Futf-8%3FB%3FSU1HMDAxOTQtMjAxMDExMDMtMjAzMC5qcGc=%3F=-715255" border="0" alt="" id="BLOGGER_PHOTO_ID_5535609466174632226" /></a></p>I have some lovely friends. <br />
<br />
I've been donated this ultra-comfy leather sofa by one of these lovely, lovely friends. <br />
<br />
As with most things in my apartment, the old sofa was included in the flat rental. My flat was a 'show home', designed to sell others in the block. So it had some odd things in it, large silver balls and other such 'art'. And a bloody white sofa. <br />
<br />
White furniture that you sit on is never a good idea at the best of times. But when your primary user sweats, dribbles, vomits and falls asleep on you a lot, you become grey and lifeless ... a bit like myself most of the time to be honest. They say you start to look like your sofa after a while, don't they? Or is that dogs?<br />
<br />
So, farewell then chemo-couch. We spent some good times together. But let's face it, in the last 12 months we spent a lot of shite times together. But you've been there for me, supporting me, perfectly positioning me to consume more TV in 12 months than I have done in my entire life. You did very, my grey friend. You shall be missed. <br />
<br />
Yet again, I've been sweating all night and I'm propped up in bed as I try to write this on my Blackberry and I keep falling asleep with it in my hand. I might move to the sofa in a bit, as I figure being leather, when I sweat all over it, I will gentle slide off it onto the floor. I think I might enjoy that. Weeee. <br />
<br />
So, "thank you" so much Ms.F, for the sofa. Or The Kemo-Kouch as he shall be known. He's amazing. And thanks also to Ms.T. and the gang of Real Men who seemingly effortlessly made the old sofa 'go away' and this new one 'appear'. <br />
<br />
Charity, it would appears, begins at my home. <br />
<br />
Zzzbleurghzzzzupppzzperdyzzzzupzz... <br />
<br />
Sent from my BlackBerry® 9700 wireless deviceUnknownnoreply@blogger.com1tag:blogger.com,1999:blog-2547612753018539023.post-4693987360793547762010-11-03T20:07:00.002+00:002010-11-03T20:16:02.580+00:00the Prophet forsees good times<div class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjX7kYpdfpTy71TuhLqAta6nk8xKKMo2hyaNT_qKqoLV-gQVwam22zoQ-Ji6L2tlE1_WUrVaHbX9f92AhM-w1vkR07dUOTYmbFLFVG36M67Avp7uZuM917V9JtDf4mqMAYlwWGyK_qcAX-y/s1600/=%3Futf-8%3FB%3FSU1HMDAxOTMtMjAxMDExMDMtMTk1OS5qcGc=%3F=-782615"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5535417350152620098" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjX7kYpdfpTy71TuhLqAta6nk8xKKMo2hyaNT_qKqoLV-gQVwam22zoQ-Ji6L2tlE1_WUrVaHbX9f92AhM-w1vkR07dUOTYmbFLFVG36M67Avp7uZuM917V9JtDf4mqMAYlwWGyK_qcAX-y/s320/=%3Futf-8%3FB%3FSU1HMDAxOTMtMjAxMDExMDMtMTk1OS5qcGc=%3F=-782615" /></a></div>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). <br />
<br />
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.<br />
<br />
My Prophet sits perfectly on my new "Ultimate Stand" in my beautiful new studio room. It makes me feel all warm and glowy.<br />
<br />
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.<br />
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. <br />
<br />
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 !Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-2547612753018539023.post-57024029787734043972010-11-03T09:45:00.002+00:002010-11-03T12:16:04.167+00:00mankles, shut-ins, sleeping with towels and john merrick's neck musclesI have Manacles. Mankles are a swollen ankles that only men get. Women get <a href="http://www.urbandictionary.com/define.php?term=cankles">Kankles/Cankles</a> but men get Mankles.<br />
<br />
I made this word up. It is a skill word.<br />
<br />
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. <br />
<br />
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? <a href="http://www.segwayaustria.at/images/segway_tour_high.jpg">I need a Segway</a>.<br />
<br />
That's moan number one. Let's move on. There's much to get through.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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).<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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 ...<br />
<br />
... damp.<br />
<br />
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. <br />
<br />
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).<br />
<br />
The hot-air blower is a life saver, along with the electric blanket that stops the sheets from becoming freezing cold.<br />
<br />
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.<br />
<br />
Honest.<br />
<br />
Right, that's three of the four things I wanted to talk about sorted. <br />
<br />
Let's close todays moaning session by talking about John Merrick's neck muscles.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
In fact, I think I could get used to sleeping upright if my neck muscles didn't hurt.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
We also talked about swollen ankles, sweating and sleeping upright. <br />
<br />
We moaned a lot. <br />
<br />
Well, I moaned, you listened.<br />
<br />
Here endeth the moaning.<br />
<br />
And almost simultaneously, the listening.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-2547612753018539023.post-51166409321757567462010-10-31T20:35:00.013+00:002010-10-31T22:14:26.550+00:00Simon-Non-SeeOh dear.<br />
<br />
The best laid plans of rats and boys.<br />
<br />
The night was painful, despite would should have been enough pain-killers to keep a horse tranquil for 8 hours.<br />
<br />
But, neigh.<br />
<br />
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. <br />
<br />
I felt bad.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
Saying that, call first.<br />
<br />
The pain is a concern. 160mg of Oxy and still pain that breaks through.<br />
<br />
I think we know what this means.<br />
<br />
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.<br />
<br />
It's tough. Cancer takes and takes and takes.<br />
<br />
It even takes my little seaside break.<br />
<br />
Cancer is rubbish. FACT.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-2547612753018539023.post-58253677128465438342010-10-29T22:31:00.000+01:002010-10-29T22:31:28.245+01:00pain managementHappy Weekend.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
So I'm suddenly taking up to 160mg of Oxy a day. <br />
<br />
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.<br />
<br />
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. <br />
<br />
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'.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
Anyway, I'm boring myself now. Opiates and football.<br />
<br />
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 ...<br />
<br />
... see you in the morning ... night.<br />
<br />
zzzzzUnknownnoreply@blogger.com1tag:blogger.com,1999:blog-2547612753018539023.post-23053447404306881022010-10-27T17:17:00.000+01:002010-10-27T17:15:58.074+01:00time off for good behaviourResult. 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.
<br>
<br>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.
<br>
<br>I'll be back around Thursday, to finish off in the office and then start round 2 of the chemo.
<br>
<br>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.
<br>
<br>Yip yip
<br>
<br>
<br>
<br>
<br>Sent from my BlackBerry® 9700 wireless deviceUnknownnoreply@blogger.com1tag:blogger.com,1999:blog-2547612753018539023.post-88638208011746045202010-10-27T11:12:00.000+01:002010-10-27T11:12:44.469+01:00alcoholics anonymous 'chair' - 26.10.10I 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.<br />
<br />
Although not a very active member of AA recently, the group fundementally saved and then totally changed my life.<br />
<br />
Here is the 30 min audio file for my AA friends overseas and for anyone else who is interested in listening to 'my story'.<br />
<br />
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 <a href="http://www.soundcloud.com/deleteallcontacts">full SoundCloud page</a>. <br />
<br />
Also, feel free to leave comments and 'share back' - AA'ers and non-AA'ers alike.<br />
<br />
I hope to God I never have to go for another job interview - how publically wide-open is my life?!<br />
<br />
Enjoy ...<br />
<br />
<object height="81" width="100%"> <param name="movie" value="http://player.soundcloud.com/player.swf?url=http%3A%2F%2Fapi.soundcloud.com%2Ftracks%2F6451856&secret_url=false"></param><param name="allowscriptaccess" value="always"></param><embed allowscriptaccess="always" height="81" src="http://player.soundcloud.com/player.swf?url=http%3A%2F%2Fapi.soundcloud.com%2Ftracks%2F6451856&secret_url=false" type="application/x-shockwave-flash" width="100%"></embed> </object> <a href="http://soundcloud.com/deleteallcontacts/aa-chair-26-10-10">AA Chair 26.10.10</a> by <a href="http://soundcloud.com/deleteallcontacts">Delete All Contacts</a>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-2547612753018539023.post-36419802898782521412010-10-26T22:57:00.001+01:002010-10-26T22:59:34.687+01:00options and statsI 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Once I've had my 2nd E-SHAP treatment, they will take the CT/PET Scan and one of three things will happen<br />
<br />
1. No change, enlargement or new tumour - well, that's is probably that, but we knew 'that'.<br />
<br />
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. <br />
<br />
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.<br />
<br />
Some interesting stats<br />
<br />
1. Globally only 10% of people who need a stem cell donor find a match<br />
2. That's because ...<br />
<br />
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)<br />
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.<br />
<br />
However ...<br />
<br />
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'<br />
<br />
'How many people are on the database?'<br />
<br />
'About 14 million'<br />
<br />
'OK...run it through'<br />
<br />
'OK, I'm showing 81 possible matches'<br />
<br />
'Blimey'<br />
<br />
'Well, at least that's some. Quite often I get zero'<br />
<br />
'81 is more than zero, there is that'<br />
<br />
-------<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
Until then ...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2547612753018539023.post-53625311118864244602010-10-24T21:13:00.018+01:002010-10-24T23:56:36.438+01:00changing rooms<div class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwPWhO9QxYadRsg9L-YA1U_E4msm-v_wTmFqINjcEAqUJJiH68lqh8L9lkYli9jf4ZqSzZOK_fLzxQalQtFYA8d-p1VSiY_sqHedlPYCQEx64ZCMaBNlKzk04zdfEPVYU4VTWTNCnm0UG7/s1600/=%3Futf-8%3FB%3FSU1HMDAxNjItMjAxMDEwMjQtMTg1My5qcGc=%3F=-713535"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5531707911262294578" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwPWhO9QxYadRsg9L-YA1U_E4msm-v_wTmFqINjcEAqUJJiH68lqh8L9lkYli9jf4ZqSzZOK_fLzxQalQtFYA8d-p1VSiY_sqHedlPYCQEx64ZCMaBNlKzk04zdfEPVYU4VTWTNCnm0UG7/s320/=%3Futf-8%3FB%3FSU1HMDAxNjItMjAxMDEwMjQtMTg1My5qcGc=%3F=-713535" /></a></div><br />
In the words of the mighty, mighty Morrissey, "good times for a change".<br />
<br />
What a fantastic weekend. Blown away by kindness from my family and left this evening feeling many warm, glowing feelings inside.<br />
<br />
First up, health wise, I actually glad to be alive again. My blood count are obviously rising quickly now and I can get up and move around without thinking about it. I feel good. A few minor pain attacks today but nothing bad .. they seem to be getting back to their normal self. It looks like I will have a full week at work and play, feeling as healthy as someone with tumours growing in their body can be and I shall be savouring every hour of the week ahead. Good times indeed.<br />
<br />
Yesterday, after a brain-wave and and a 'what if' question posed to my step-dad on Friday night, I was invaded by some family members - two sisters, a step-dad, a nan and an uncle .. all prepared to make my day special, whilst I alternated between lying on my side in pain and pathetically helping out, which wasn't needed.<br />
<br />
The task .. to take my spare double-bedroom and dismantle the beds, remove all the furniture, hoover it through and make me a large dedicated studio space. As it stood, my home studio was in my other bedroom where I slept, cramped down one end. Getting to anything was a headache - quite literally - as plugging anything in or out, normally resulted in a banged-head on the corner of a synth.<br />
<br />
The day was really pleasant, got to catch up with my sisters and nan, whilst the men set to work ... and what a job they did. I was left with an amazing space to move everything into. They also helped lump in and set up the main gear for me. I had bought myself a new space-age keyboard stand in the morning, to celebrate the impending new studio build and by the time I got everything set-up, I was overwhelmed by a)how great it looked, b)how much space there was and c)how practical things are now - like getting behind the PC/Mixers to plug things in. You can tell I'm happy. Really happy. I keep walking into the room, just to be in there and smiling. A really nice space to be.<br />
<br />
I got a bit tearful that night - the kindness of my family to just make it happen for me. I think my step-dad was so pleased he could do something for me that he was just as happy as I was to get a new studio music room.<br />
<br />
Thanks a lot Jimbo and Malcolm for all your hard work. And thanks to Simone for the tea making, the fish and chip preparing and the clearing up and to be Bianca for feeding the ducks and making me laugh and to nan for being there and giving big hugs. It was a special day.<br />
<br />
Today has been a day of finishing setting up the room and just enjoying being at home and in my new music room.<br />
<br />
Work tomorrow. I hope I remember how to get there.Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-2547612753018539023.post-76170397841818564352010-10-22T21:05:00.001+01:002010-10-22T21:06:35.228+01:00less is moreLess pain,<br />
Better mood,<br />
Blood test at hospital,<br />
Went out for food.Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-2547612753018539023.post-45117987671919284822010-10-22T01:02:00.000+01:002010-10-22T01:02:26.366+01:00insane with sidepainI hate this bit. <br />
<br />
I'm at the returning energy/incredible pain attacks phase. The word that defines everything is 'frustrating'<br />
<br />
There's nothing worse than having the energy levels up to get your off the sofa and inject some excitement about music creation etc, only to be *forced* to lie down in that sodding 'on my side' position again that I've spent 80% of my life in this year.<br />
<br />
Yes, it better with Oxy but it's still disabling. And my patience has run out. Best avoid me for a short while. I get snappy when I'm in that place.<br />
<br />
In a moment of madness, I thought I'd join three senior lads at work for their breakfast meeting yesterday morning. I had been lent a car, which I drove into town at 7:30am. The combination of an unknown car, a manual gearbox, my Oxycodoned head and general shakiness, led to a driving experience so harrowing that when I got to the other end, I handed over the keys to my mate and said "I should not be on the road". It was insane. <br />
<br />
Still, I sat with the guys and listened to them talk business whilst I tried to remain comfortable and contribute something, it was obvious I was in no fit state for anywhere but home. I got back into bed and slept until 4:30pm. I tried. I tried.<br />
<br />
Back to today. The energy returns and I'm getting excited but the pain is doing it's best to keep me shut-in. Oh, and the 'nap' that I HAVE to take. Around 15:00, my body gives up. It has to nap. Really, really annoying.<br />
<br />
I hate the nights. The sleeping bit. The trippy dreams, the sweaty bits, the night terrors (found myself shouting last night), waking every hour on the hour, wandering in the kitchen at 4 for milk. Hate the whole thing. The small bit of good news, is that in the early morning, I now have a regular comfortable poo with no screaming or blood. <br />
<br />
A nice poo cannot be overstated. It is an almost religious event when it's been such an effort for so long. You don't want to read about poo, but cancer and cancer drugs brings poo to the forefront. So good poo news should be celebrated. <br />
<br />
Enough now. <br />
<br />
I wake up early now. Around 6. Come into the kitchen and read iPad Times, which sends me back to sleep annoyingly. I bloody hate sleeping. I hate lying on my side. I hate that foetal position. I hate napping.<br />
<br />
But the hate means I am coming back to life - these are good signs. By the weekend I should be up and about full time. Able to go out and have an almost full day, to routine of others. I will get to work next week. I so want to - I'll have one week before they make me do all this again and I'll be back to the 8 foot room for weeks. <br />
<br />
Please God, give me a good week where I can work a bit and make some music at my workstation without The Pain kicking in. <br />
<br />
I feel like it's close.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-2547612753018539023.post-1925295819939424422010-10-19T12:18:00.000+01:002010-10-19T12:18:13.545+01:00my fifteen minutes are being used upI'm writing this from the day centre, whilst I have a few pints of the ol' red stuff dropped into me. The good news is that is completely pain free and easy due to the now-fully-functional Hickman line.<br />
<br />
As you know, I make music when I can ... I use a piece of software called FL Studio by Image Line.<br />
<br />
The guys at Image Line decided to do an Artist Profile on me this week and you can read the full interview with me <a href="http://www.image-line.com/documents/news.php?entry_id=1283920408&title=artist---delete-all-contacts">by following this link</a><br />
<br />
Amazingly, since Image Line put out this promo for me, I've had 2000+ track listens since Sunday night! Insane.<br />
<br />
Also, be sure to check out my new homepage <a href="http://www.deleteallcontacts.com">www.deleteallcontacts.com</a> if you haven't already.<br />
<br />
Ego trippin' whilst blood is drippin'Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-2547612753018539023.post-26812706409194729552010-10-18T17:25:00.011+01:002010-10-18T17:42:26.330+01:00swing low<p class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwfJiwbDxWNEwSbb3AngnwJaCbwFpTBXhwvfCr-bqCY3cMKL8VAxIeVq5OBGmBJx9FCye8CO0OjKZ8hoFm0r2frL7u0201bw6mvTGh708E4sDd2_iNr3OD5zEJTgYFFlpN_D0exvTzewA0/s1600/=%3Futf-8%3FB%3FSU1HMDAwODctMjAxMDEwMTgtMTY0Mi5qcGc=%3F=-734024"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwfJiwbDxWNEwSbb3AngnwJaCbwFpTBXhwvfCr-bqCY3cMKL8VAxIeVq5OBGmBJx9FCye8CO0OjKZ8hoFm0r2frL7u0201bw6mvTGh708E4sDd2_iNr3OD5zEJTgYFFlpN_D0exvTzewA0/s320/=%3Futf-8%3FB%3FSU1HMDAwODctMjAxMDEwMTgtMTY0Mi5qcGc=%3F=-734024" border="0" alt="" id="BLOGGER_PHOTO_ID_5529422651134505794" /></a></p><br />
I have just returned from the hospital and above you'll see my blood count results. It's fair to say that I am officially 'neutrophenic' now.<br />
<br />
Have a giggle at what my 'value' is compared to what a 'normal range' is. Pay attention to the 'critical' Neutrophils.<br />
<br />
Still, this is all to be expected, this is what the chemo does - kills cells.<br />
<br />
They reckon I will be slowly dragging myself out of this hole in the coming week - the obvious danger is that I'm completely wide open to infections. I have to keep a close eye on my temperature. Rather surprising, I was told that I could call '999' if I get into trouble in the night. I guess potentially life-threatening is what Ambulances are for ... it just never really occurred to me.<br />
<br />
I have a blood transfusion tomorrow - two bags of blood to be given, starting at 9am and will take all sodding day. Tedious isn't the world - lying on a day-centre couch, waiting for bags of blood to drip in. Still, it might give me some energy. And God bless iPad.<br />
<br />
That's it - onwards, onwards ... more hospitals tomorrow *sigh*Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-2547612753018539023.post-62205061954706978432010-10-16T21:11:00.000+01:002010-10-16T21:11:49.275+01:00home againEvening. <br />
<br />
Saturday evening at home, in front of the ol' widescreen TV in HD, with a couple of snacks and an odd feeling of 'what the hell is it I do again?'<br />
<br />
So ... how I am. Well, not bad at all. Sleeping was hard last night, as my brain started to wake up again. When you're in hospital, you are in a position where you have no choices to make, therefore things like sleep seem to come more naturally, as there are no plans to make, nothing to be projecting towards.<br />
<br />
However, at home, the ol' brain starts to awaken to the possibilities of the weekend. Music, iPads, food shopping, washing, washing up ... oh and that distant memory of 'work' ... all the things that you don't have to worry about caged in a 8 foot room, being fed, watered and drugged.<br />
<br />
This morning my good friend came to pick me to take me into town to upgrade my iPad (I realised I needed the largest model available when I was in hospital and fair-play to John Lewis stores for bending the rules - once I'd played the cancer-card!). <br />
<br />
The initial 'getting there' was a bit hairy. My blood pressure was verging on the worryingly low. Just walking to the car was a bit of a 'oh dear, how is this going to go...', as my light-headedness made me want to get vertical as soon as possible.<br />
<br />
However, we made it to the shops and with some Lucazade and some very slow walking, I blagged my iPad upgrade and went on for coffee and chats. The small things. <br />
<br />
The Oxy drugs make dealing with people tricky - my intolerance towards others is very high. I've noticed I'm (even more) short-tempered and I find myself laughing at myself as I catch myself wanting to rip people's heads off for daring to walk across my path. How bloody dare you, you're ruining my opiated buzz. Yet, ironically, it was the being amongst the great unwashed that made me feel alive again. People, I love you dearly, but I just feel I should be allowed to dismantle your internal organs for not realising I'm trying to walk around your sodding shopping-overloaded pushchair.<br />
<br />
The pain has returned in my side. I was confused by this at first but realised that it is a familiar pattern - what is happening is that my steroids have stopped. I remember after my R-Chop treatment, once the steroids wore off, I had incredible pain - thankfully, I have Oxycodon to help - and a big help it is.<br />
<br />
It's odd being on noticable 'downer' drugs - especially for someone that's 'clean and sober' but hell, if there's a member of NA or AA out there who would like a word, I'm all fucking ears. I advise you bring protective clothing and weapons.<br />
<br />
So, I'm home, slightly dopey, slightly confused and slighty adjusting ... but a couple of days and ... hmmmm ... let's see ... <br />
<br />
Good to be back.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2547612753018539023.post-87938426441313315192010-10-15T16:21:00.000+01:002010-10-15T16:21:41.269+01:00no, you shall not have too much good news ...Just received a phone call to say that "someone" in my MOT garage has reversed a car into my Audi TT side door. It won't be a customer, it will be the garage team. <br />
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Of course, "they will sort it" but for fucks sake, give me a break Lord. I love that car and it was in mint condition. A simple MOT, for God sake. <br />
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Well, I guess I was allowed to be in a good mood for about an hour back there .. Far too much pleasure. <br />
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Welcome back to the real world, huh. <br />
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Shiny things don't stay shiny for long.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-2547612753018539023.post-83069444919973840372010-10-15T14:46:00.000+01:002010-10-15T14:46:40.583+01:00but there is always hopeJesus Christ!!<br />
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I'm going home!!<br />
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I'm not asking too many questions but I'm out of here. I can't believe it. The Big Doc just said to deal with it at home and if things got bad, come back to A&E. <br />
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They like to mess with your mind in this place for sure ...<br />
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Right ... Get me the fuck out of here. <br />
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I need to see a tree.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-2547612753018539023.post-61381655998145101122010-10-15T11:06:00.000+01:002010-10-15T11:06:04.887+01:00your crosses failUncross everything. It didn't work. <br />
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It's been confirmed I'm here for "about a week" longer. Thank you for my 120 minutes of unfounded hope. <br />
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My 'neutrophils' (white blood cell count) should be about 4 when healthy and they are heading south now below 1.8. Obviously this is the Danger Zone they want to see me over, where infections can spring up in a heartbeat.<br />
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I tried to go down to the shops. I wasn't allowed as my blood pressure is still very low when standing, so I'm literally just sitting on a bed 24/7 now. <br />
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Obviously I'm fucked off. But accepting. There's nothing else to be. There's no point stressing too much, as even when I get out, it's all got to be repeated, so it's not like there was a brilliant light at the end of the tunnel. <br />
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I guess I was just looking forward to a coffee shop with some mates, a bath, some proper WiFi, watching HD soccer, a bit of retail therapy and some music making ... The odd things you miss. <br />
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I guess all that might be irrelevant to me soon, as I crash and don't feel like doing anything at all except sleeping. Best get it out the way ... Time moves quick enough ... Its not as slow as you might expect. <br />
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Still, who'd be me, huh? Whatever you're up to this weekend, I'm sure it will be more exciting than what I've got on.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-2547612753018539023.post-16390742718149024052010-10-15T09:34:00.000+01:002010-10-15T09:34:57.605+01:00keep them crossedIve just had a visit from Big Doctor who reckons that if my latest blood results from this morning come back OK, I may as well go home for the weekend and just do as I have been for all my previous treatments ... Keeping an eye on temperature and coming back if things get out of hand. <br />
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It would be out for about a week before getting back in to do it all again ... A week where I will probably want to see the Seven Wonders of the World but will actually be in my 7 foot windowless IT room. <br />
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Home from home. <br />
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Anyway, let's not get ahead of ourselves here. You know they love to build me up and smash me down ...<br />
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keep 'em crossed.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-2547612753018539023.post-20032944088072034002010-10-15T08:35:00.000+01:002010-10-15T08:34:14.631+01:00Breakfast<p class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivz5p_QkQq5FgLYLJ2IeLFTSBu9c_hjUhOry5knmOTPlj6bIGsq5WpxWTwKaiVoM4j8-w5NZm7lRzs70WaxnrYYh4lbdtc6uJP98akoLZNGe6Vg54hPld4naHZwR_QsDh3v7mReo_i65rN/s1600/=%3Futf-8%3FB%3FSU1HMDAwODYtMjAxMDEwMTUtMDgzMi5qcGc=%3F=-754634"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivz5p_QkQq5FgLYLJ2IeLFTSBu9c_hjUhOry5knmOTPlj6bIGsq5WpxWTwKaiVoM4j8-w5NZm7lRzs70WaxnrYYh4lbdtc6uJP98akoLZNGe6Vg54hPld4naHZwR_QsDh3v7mReo_i65rN/s320/=%3Futf-8%3FB%3FSU1HMDAwODYtMjAxMDEwMTUtMDgzMi5qcGc=%3F=-754634" border="0" alt="" id="BLOGGER_PHOTO_ID_5528172898172114354" /></a></p>Bleurgh.
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<br>Feeling OK. Still playing some odd waiting game, where The Powers That Be are convinced I'm due a shitstorm.
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<br>Will write more soon but I'm basically "fine". Getting better at The Times crossword.
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<br>Enjoy your Friday feelings ...
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<br>Sent from my BlackBerry® 9700 wireless deviceUnknownnoreply@blogger.com1