The Kemo Kid

The End

2010-12-15T14:49:00.002Z

As 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.

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.

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.

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.

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.

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.

clocking in

2010-11-24T21:02:00.000Z

I 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.

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.

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.

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.

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.

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 ...

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 ...

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.

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.

Bad mood. Sorry. I'm "OK" just stressed about work and future of the Hospice. I'm sure you can understand. I

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 ...

Night.

Sent from my BlackBerry® 9700 wireless device

"thank you for calling us today. your call is very important to us. please hold."

2010-11-20T10:16:00.001Z

Unfortunately our call-logging system is under heavy strain and has come to a crashing halt.

-----------

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.

However, this morning, I've taken this rare window of opportunity of 'a tad of energy' to state that ...

1. I've read every txt, email, Facebook message and letter that has been sent.
2. I've listened to every voice mail

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.

What I need to do is to try to update the blog to tell you what's going on but again, the above apply.

I need a PA.

But in the absence of that ...

1. I am in a Peace Hospice in Watford - I am happy here (relative)
2. I will be sent home in a the coming week
3. I have a 'family meeting' on Tuesday where we will be told of the plan
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.
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.

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.

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.

Love you all.

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(oh, if you were having trouble viewing my weepy video above, it should now be fixed)

the hardest part of this, is leaving you

2010-11-12T15:42:00.002Z

Dear, dear readers.

What can I say? Take a seat, please.

For I have the news that no-one here wanted to here.

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.

I have been given "a few months" to live.

There is no more treatments to offer, no more 'we could tries'. It is, at last, over.

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.

I'm going to leave you now, in some cases with a hundred questions you want answered, but for now, that is all.

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.

It's been about 24 hours since I found out and it feels like 7 days.

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.

When all is said and done, the hardest part of all of this, is leaving you.

PET/CT scan

2010-11-09T11:59:00.000Z

I've having a scan today. There will be a delay until I get the results.

Please do not ask me 'if I've heard...' or 'how did it go'.

Again, depending on results it may take a while before I can 'go public', as there are people I will need to speak to.

I know you mean well and its appreciated but you'll know when it's time for you to know.

Much love

Sent from my BlackBerry® 9700 wireless device

R-ESHAP Session 2 delay ..

2010-11-05T19:44:00.002Z

I really, really can't type much. I'm falling asleep.

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.

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.

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.

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.

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.

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.

All bar the slightly angry conversations and minor details, you're basically up-to-date with where I am.

Can't write any more. Too snoozy. More soon.

Kemo-Kouch

2010-11-04T08:33:00.005Z

I have some lovely friends.

I've been donated this ultra-comfy leather sofa by one of these lovely, lovely friends.

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.

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?

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.

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.

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'.

Charity, it would appears, begins at my home.

Zzzbleurghzzzzupppzzperdyzzzzupzz...

Sent from my BlackBerry® 9700 wireless device

the Prophet forsees good times

2010-11-03T20:07:00.002Z

A new synth. The last synth I will probably ever buy. It's a beautiful Prophet 08 'Pots Editions' ('pots' are the little knobs - you can control everything from the front panel without needing to press lots of buttons to get to hidden features - each parameter has it's own 'pot' - just tweekers paradise).

It completes the 'hardware synth' part of my studio, which now consists of a DSI Mopho Keyboard, a Virus Ti2 Keyboard and the new DSI Prophet. Of course I have plenty of virtual synths in my PC - my love for Spectronics Omnisphere runs deep, but hey ... there's something so much more FUN about knob twiddling vs mouse clicking. We all like to twiddle our knobs. Purile humour is not beneath me.

My Prophet sits perfectly on my new "Ultimate Stand" in my beautiful new studio room. It makes me feel all warm and glowy.

Why am I posting this on my cancer blog ... Because there are some great things in my life and its good to remind myself how lucky I am. My 'toys' make the bits inbetween the pain, joyful.
I've sketched out a new song this afternoon - its a tongue-in-cheek vocal song. Sadly, due to the impending hospital visit it won't be ready for a while, but the song is laid out and will be ready to pick up when I get out of the zoo.

That is all regarding my new synth. I shall be stroking it this evening and then I'm going to attempt to go to work tomorrow. Wish me luck !

mankles, shut-ins, sleeping with towels and john merrick's neck muscles

2010-11-03T09:45:00.002Z

I have Manacles. Mankles are a swollen ankles that only men get. Women get Kankles/Cankles but men get Mankles.

I made this word up. It is a skill word.

Why do I have Mankles? It's a 'rare' side-effect of the pain-killers I am taking. It's on the biblically epic side-effect list on the leaflet in the box of the pain-killers.

What does this mean. Well, walking is now less pleasant than it was - and walking used to be pretty shit anyhow to be honest, as lumping lumps around is no fun. Walking? I need a Segway.

That's moan number one. Let's move on. There's much to get through.

I am now officially a shut-in. A 'shut-in' is an American term for people who are too fat to leave the house and have to have crisps delivered by diggers, or something. They were floral dresses because no clothes fit and eventually Jerry Springer smashes down their house so they can leave, which make for good TV, but after a while they get cold and wish they hadn't agreed to it.

OK, so I'm not filling a lot of the above criteria but I think from now on, I won't be going too far under self-propulsion. Let me explain.

Last night I witnessed an amazing football match. For 90 mins, I sat on the edge on a football pitch and saw the World Class players of Inter Milan (current European Champions), being taken apart by (relatively) new sensation Gareth Bale and his fellow team-mates. The atmosphere was electric and did somewhat embarrass Old Trafford's sometimes quiet crowd (although White Hart Lane does have the advantage of being about half the size and tightly packed-in).

OK, so this isn't a football/soccer blog - what's my point? Well, the hours either side of the 90mins were VERY tough. The journey to my friend Mark's house who took me into London, was hard. Pain gripped my left hand side and by the time I got to his house, I was angry, stressed frustrated, sickly feeling and - well - not an ideal guest.

We were slightly late, and Mark drove to the ground. I lowered the car seats to a lying-down position and was shovelling down pain-killers and sweating and not really talking. Things got a bit better as the journey continued.

We then had a walk at the other end. I'm so slow and it's only when I get 'out there' that I realise how 'out there' I am. I feel different somehow. People bump into me and walk through me, chests puffed out on the way to the 'footy'. I meekly try not to get in anyone's way and try - but fail - not to moan or talk about cancer the entire walk.

Once in the ground, Mark introduced me to all the people around me in the Season Tickets holders seats and I felt more at home. I was able to relax a bit and enjoy one of the greatest games of European football that has been played for a long time.

Then came the walk home. I was knackered. My pace was so slow. Mark was struggling to 'keep down' (I assume this is the opposite of 'keep up') and I think I was starting to annoy him. I was annoying myself.

We finally got back to his place, I grabbed my car after a quick caffeine boost and drove home, thankfully with very few cars on the road. The side-pain ever present, I made a vow to myself that I wasn't doing these nights out anymore.

No car journeys over a few miles, if I'm not feeling 100% up for it. No crowded events (gigs, etc). No situations where I HAVE to walk a distance. Obvious local shopping etc is fine, as you can just stop for coffee or go home - but no 'there's a 20 min walk at the other end' type things.

I need to stay warm, safe and near a kettle, my bed, my sofa, my toys. It's a scary world out there and whilst, of course, I will be doing stuff, I really have to limit the areas to where I will go and what I will do.

A friend who was a MacMillian nurse for kids, said to me some time ago 'We tell all parents of cancer suffers to expect every day to be hard. If you get a good day, that is a bonus'. I didn't buy this when she told me. My days were mostly good and I fought hard again the bad. The balance of power has shifted now. Most days are tough. You get good 'periods'. You don't get good 'days' anymore - not what I would call a good day. A good day is a pain-free, able-to-drive, feeling-fit, eat what you like, drink what you like and not worry about poo'ing kind of day. Those days seem far behind me.

So, I am now a shut-in. You'll find me in my flat in my lounge-wear, tinkering on the internet or with music. Where it's warm, safe, soft and ...

... damp.

Christ, I sweat a lot. A lot. I know this isn't a new thing. But it's pretty rampant now. I go to bed with towels and I wake about every hour in the night, lean over and fumble for a towel (don't open my eyes - salt water will pour in), and towel myself dry.

Then about three times a night, I will quickly slide out of bed, into my en-suit bathroom and turn on the hot-air blaster heater thing that's on the wall. An amazing device, it gets so hot that it could take the skin off a rhino in about 3 mins, it's perfect for drying out a soggy, rather pathetic looking man standing there in a two tone set of grey 'pyjamas' (two tone, due to the soaking wet parts and the 'just damp' parts).

The hot-air blower is a life saver, along with the electric blanket that stops the sheets from becoming freezing cold.

My sheets are covered in suspicious look white stains - I've had to explain to my cleaner, that I haven't regressed into a state of teenage hood but they are merely salt deposits that have dried out.

Honest.

Right, that's three of the four things I wanted to talk about sorted.

Let's close todays moaning session by talking about John Merrick's neck muscles.

Mr Merrick was The Elephant Man. If you haven't sent this film, then basically there is a huge whole in your life that needs filling. Go and see it, cry a lot and come back. Off you go.

Now, whist we're waiting for the Americans to catch up, the rest of you will remember that John couldn't sleep like a normal person, because he had such a heavy head that he wouldn't have got up again and it would apply so much pressure on his wind pipe, he would suffocate and die.

Well, I reckon my head is about a quarter of the size of John Merricks, although certain ex-girlfriends would swear blind it was bigger.

On Sunday night and last night, I found that The Pain wouldn't let me sleep lying down. Not on my back, not either side. Thank you God. The only thing that seems to not be causing pain, was to sit upright, with my back against the backboard, sometimes even crossed legged on the bed, as having outstretched legs seems to hurt.

This is not an idea sleeping position - unless you're Gandhi or someone else trained in the art of looking like you're meditating for hours, when really you're taking a nap, dreaming about eating giant iced-buns.

For someone like me, it's basically a, *searches for right phrase*, yes, it's a fucking drag. Yet, be sleepy enough and you can sleep in just about any position. Besides I don't 'sleep' anymore, I have a series of 10 x 40 mins naps, broken by trips to the hot-air blower, toilet, towelling sessions or fluid replacement guzzling - so a couple of 40 mins naps in an upright position is not too difficult, as I'm so shattered.

But when you wake, you will find that you are now leaning to one side and slightly forward at about a 50 degree angle, dribble is coming from your mouth but not quite reaching the duvet and your neck hurts like a bastard.

In fact, I think I could get used to sleeping upright if my neck muscles didn't hurt.

It stuck me at 4:00am how amazingly strong John Merrick's neck muscles must have been to keep that great lump upright whilst he slept. Respect John, respect.

So, I think I need to invest in a travel pillow thing. An inflatable pillow that goes around your neck and supports your head as it lolls to one side - used by aircraft passengers. This should help support my large, empty head and stop it pulling me over mattress-bound, like a thin-spring with a ball-bearing stuck on top. Tools to aid a floppy head.

Right, we've covered a lot today folks. We've covered my admission that I cannot run around Planet Earth doing the things I want to do anymore. My 'going out' social life shall be restricted to local gentle activities, minimal driving and not a lot else.

We also talked about swollen ankles, sweating and sleeping upright.

We moaned a lot.

Well, I moaned, you listened.

Here endeth the moaning.

And almost simultaneously, the listening.

Simon-Non-See

2010-10-31T20:35:00.013Z

Oh dear.

The best laid plans of rats and boys.

The night was painful, despite would should have been enough pain-killers to keep a horse tranquil for 8 hours.

But, neigh.

However, the side effects were effective - namely the drowsiness. So the first leg of my car journey to the seaside (my lovely car, beautifully restored, valeted, waxed and polished ...) via Surrey, was a pretty scary experience. I wasn't really in any danger as such, but I kept having mini panic-rushes, as my drowsiness kicked in - a large can of Red Bull did nothing. By the time I got to Surrey to see the folks, it was obvious I would be completely mental to drive myself to Worthing. I couldn't do it. I felt anxious and fundamentally unsafe.

I felt bad.

I know Simon understands but I hate blowing him out. Most people I'll happily blow out, especially when there's football on, but not him. Not Simon.

But, as I knew, Simon was only concerned with my safely/health/sanity and ... well ... I love you man and we'll try again after the next session. Train, ahoy.

I've seen a lot of family today - something that I now really love. No longer a duty, it's a pleasure to be with my step-dad, dad, sisters, nans recently ... I just like being around them.

Saying that, call first.

The pain is a concern. 160mg of Oxy and still pain that breaks through.

I think we know what this means.

I've just arrived back home. Another very edgy journey - but better to do it on an empty M25, than a busy Monday. The pain is back again - just necked my evening doses.

It's tough. Cancer takes and takes and takes.

It even takes my little seaside break.

Cancer is rubbish. FACT.

pain management

2010-10-29T22:31:00.000+01:00

Happy Weekend.

Recently 'The Pain', the on-going-for-months-never-right-since-the-operations-new-tumours-in-the-spleenetic-bed pain has now turned into a full time presence.

Where we were at before was a sudden and horrendous pain attack, that a few months go, had me taking hot baths, almost crying and clutching myself in foetal positions.

More recently, I was given Oxycodon. Somewhat optimistically I was started on 5mg, 4 times a day. I accidentally started 'doubling-up' from the off, as I habitally take two of everything. So I was on 40mg a day. My nurses were cool.

This worked fine until the latest stage on The Pain. It is now a full-time background thing. It now feels like someone has punched me in the kidneys, about 5 minutes ago - a dull ache speads out from the side and comes all around the front. This is it's 'normal background state'. Then it escalates - normally every 4 hours. Other things can bring on attacks - like sitting at my work desk for a few hours without getting up and then moving and walking for a short while.

The bottom line is that just to get through the day that 10mg hit has become 20mg and I'm still in pain. I spoke to my pain-specialist and pharmacist today and she gave me some 'slow release' Oxycodone to take - 40mg in the morning and 40mg at night. They will apparently slowly release the Oxy into my body through the day. I'm them to take the fast release stuff as normal.

So I'm suddenly taking up to 160mg of Oxy a day.

I was sick this morning. The doubling-up has made me quite nauseous - I'll get used to it - but i'm now expecting another wave of it, as I've just taken my 4 x 10mg slow release evening tablets and a 10mg faster dose because, well, i'm in pain again.

Christ this stuff can make you drowsy. Proper 'fall asleep with my blackberry in my hand' stuff. And also, although I can't find this documented, for some reason, all savoury cooked food tastes like shit to me at the moment.

I got a curry in last night and threw it all away. I "made" a simple Fish Pie tonight and although I ate most of it, it had the same dead taste. I first discovered this when I got out of hospital, I warmed up a tin of baked beans to go with a pie (check out my healthy diet) and thought the beans were somehow off, so threw them out whilst cooking ... then got to the pie and threw that away too. Everything tastes really 'not right'.

Things I do like are ice-cream, Coco Pops (sugar cereals), milk and er, that's about it - oh, a tomato salad if I can get some and I did have a some nice seafood the other day. But loads of stuff just tastes rubbish - it must be something to do with the Oxy, It's the only big change in my system recently.

I've got a studio day tomorrow, off to see family Sunday (oh, my car is back - mint condition - all washed and valeted), going to stay with Simon-On-Sea (as he shall now be know) until Wednesday evening, where I am lucky enough to have a ticket to see Tottenham Hotspur (Spurs) play Inter Milan in a Champions League match. Really excited. Spurs are kinda my 'second team' but to get to see Inter play and hear the ol' Champs League music, will be great.

If you're American, you will have no idea what I'm talking about. Soccer. Biggest 'club' tourney where all the top teams in Europe compete. Trust me, it's a big deal over here. Your World Series. What a bloody misnomer 'World' is in that title, by the way.

Anyway, I'm boring myself now. Opiates and football.

I'm not going to stay awake much longer, although as I type this I'm in a mini-world of pain again. I still hate the nights - pain and sweating. Lots of sweating. As in, I go to bed with two towels. I have a really good air-blower heater in my en-suite bathroom. Comes in very handy at 3.00am, blasting with my cold damp body with warm air. Anyway ...

... see you in the morning ... night.

zzzzz

time off for good behaviour

2010-10-27T17:17:00.000+01:00

Result. Extra week off from hospital. I asked and I received. I asked because this week has been all 'worky' and I wanted an actual mini-break before I got back into solitary.

I'll go to Worthing Sunday night to stay for a few nights with me besty chum Simon to eat seeds, fish'n'chips and catch some fresh sea air.

I'll be back around Thursday, to finish off in the office and then start round 2 of the chemo.

Its not all plain sailing. I'm rough today. Had the ol' sidepain growing a lot. Sitting a work desks is not good for it. Didn't sleep so good last night but overall I'm 'stable' and looking forward to some quality time away from the usual sofa and work scene. No offence, scene.

Yip yip

Sent from my BlackBerry® 9700 wireless device

alcoholics anonymous 'chair' - 26.10.10

2010-10-27T11:12:00.000+01:00

I gave a 'chair' last night at a North Watford meeting of Alcoholics Anonymous. A chair is a 20-30 'life story' of how AA changed a person. Usually following a simple pattern of 'what is was like', 'what I did in AA', ' what it's like now'. The aim is not to 'show off' how well you're doing, but to help the newcomer identify with the illness, the drinking stories and chaos (although everyones story is different) and hopefully realise that recovery is possible from what they see and hear in front of them.

Although not a very active member of AA recently, the group fundementally saved and then totally changed my life.

Here is the 30 min audio file for my AA friends overseas and for anyone else who is interested in listening to 'my story'.

The file is downloadable - if you are in AA and you think my chair has a message, please download and distribute to any newcomers or AA members facing illness that you feel it might help. To download - click the little black down arrow on the right of the widget and save the MP3 to your computer - as you can with most songs available on my full SoundCloud page.

Also, feel free to leave comments and 'share back' - AA'ers and non-AA'ers alike.

I hope to God I never have to go for another job interview - how publically wide-open is my life?!

Enjoy ...

AA Chair 26.10.10 by Delete All Contacts

options and stats

2010-10-26T22:57:00.001+01:00

I got a call today from a, well, to be honest I can't remember what she called herself, but she works in the stem cell bone marrow department of somewhere. Or something.

She said that she wanted some more blood from to get my exact stem cell match. Or something. I explained I was back in hospital on Sunday night and where I would be and she could have as much as she wanted then, but I wasn't making the effort to go to my cancer unit just for that. She understood and is arranging for one of her blood-leaching minions to come and see me next week.

She seemed pretty clear on my case, so we had a chat. She explained things slightly differently (doesn't bloody everyone) but she seemed to know what she's talking about, so here we go.

Once I've had my 2nd E-SHAP treatment, they will take the CT/PET Scan and one of three things will happen

1. No change, enlargement or new tumour - well, that's is probably that, but we knew 'that'.

2. Near complete remission - unlikely but possible. If there is huge response then I will have the stem-call treatment but I will use my own bone marrow after the nuclear chemotherapy that destroys everything. Obviously this would be a safer procedure as there are no rejection issues.

3. If all tumours have gone into remission (some shrinkage), then I will have the same procedure but need a bone marrow donor. I really haven't read up about this yet, as I see no point but I do know it's more complex as a) you need to find a donor and b) even if you do find a match, there can be 'rejection' issues. I'm used to being rejected, so I think I'm in a good position here.

Some interesting stats

1. Globally only 10% of people who need a stem cell donor find a match
2. That's because ...

a) donating bone marrow to go on the database is bloody painful in the first place, so unlike blood the database isn't that big (more later)
b) There are very few (relative) non-white caucasian people on the register. People like myself are far more likely to find a donor, so don't let the 10% phase you too much.

However ...

The lovely lady I was speaking to said 'I do have your basic type here, because we took initial tests back in early September. We need more blood to get a more detailed match, but I can do a initial search for you to see how many people might be donors globally'

'How many people are on the database?'

'About 14 million'

'OK...run it through'

'OK, I'm showing 81 possible matches'

'Blimey'

'Well, at least that's some. Quite often I get zero'

'81 is more than zero, there is that'

-------

So there you go. Obviously I'll keep you posted with more info on this stem cell bone marrow thing should it become a viable option. I just don't want to read too much right now, as I'm trying to not project too much.

Had a brilliant day at work yesterday, really good to see everyone. Today was complete stress - the aircon unit in the server room went down AGAIN and most of my day was chewed up with that. Despite all the end-users somehow not needing a thing for three week, seem to all of sudden not be able to open documents without my help. Really weird. Anyway - reminded me of what a normal shitty days work was like.

I have just come back from speaking at AA an and I recorded in on a dictaphone. I will be presenting it on this blog for all to listen to in the next couple of days. It's about 30 mins long.

Until then ...

changing rooms

2010-10-24T21:13:00.018+01:00

In the words of the mighty, mighty Morrissey, "good times for a change".

What a fantastic weekend. Blown away by kindness from my family and left this evening feeling many warm, glowing feelings inside.

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.

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.

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.

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.

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.

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.

Today has been a day of finishing setting up the room and just enjoying being at home and in my new music room.

Work tomorrow. I hope I remember how to get there.

less is more

2010-10-22T21:05:00.001+01:00

Less pain,
Better mood,
Blood test at hospital,
Went out for food.

insane with sidepain

2010-10-22T01:02:00.000+01:00

I hate this bit.

I'm at the returning energy/incredible pain attacks phase. The word that defines everything is 'frustrating'

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.

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.

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.

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.

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.

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.

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.

Enough now.

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.

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.

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.

I feel like it's close.

my fifteen minutes are being used up

2010-10-19T12:18:00.000+01:00

I'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.

As you know, I make music when I can ... I use a piece of software called FL Studio by Image Line.

The guys at Image Line decided to do an Artist Profile on me this week and you can read the full interview with me by following this link

Amazingly, since Image Line put out this promo for me, I've had 2000+ track listens since Sunday night! Insane.

Also, be sure to check out my new homepage www.deleteallcontacts.com if you haven't already.

Ego trippin' whilst blood is drippin'

swing low

2010-10-18T17:25:00.011+01:00

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.

Have a giggle at what my 'value' is compared to what a 'normal range' is. Pay attention to the 'critical' Neutrophils.

Still, this is all to be expected, this is what the chemo does - kills cells.

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.

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.

That's it - onwards, onwards ... more hospitals tomorrow *sigh*

home again

2010-10-16T21:11:00.000+01:00

Evening.

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?'

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.

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.

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!).

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.

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.

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.

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.

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.

So, I'm home, slightly dopey, slightly confused and slighty adjusting ... but a couple of days and ... hmmmm ... let's see ...

Good to be back.

no, you shall not have too much good news ...

2010-10-15T16:21:00.000+01:00

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.

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.

Well, I guess I was allowed to be in a good mood for about an hour back there .. Far too much pleasure.

Welcome back to the real world, huh.

Shiny things don't stay shiny for long.

but there is always hope

2010-10-15T14:46:00.000+01:00

Jesus Christ!!

I'm going home!!

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.

They like to mess with your mind in this place for sure ...

Right ... Get me the fuck out of here.

I need to see a tree.

your crosses fail

2010-10-15T11:06:00.000+01:00

Uncross everything. It didn't work.

It's been confirmed I'm here for "about a week" longer. Thank you for my 120 minutes of unfounded hope.

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.

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.

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.

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.

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.

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.

keep them crossed

2010-10-15T09:34:00.000+01:00

Ive 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.

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.

Home from home.

Anyway, let's not get ahead of ourselves here. You know they love to build me up and smash me down ...

keep 'em crossed.

Breakfast

2010-10-15T08:35:00.000+01:00

Bleurgh.

Feeling OK. Still playing some odd waiting game, where The Powers That Be are convinced I'm due a shitstorm.

Will write more soon but I'm basically "fine". Getting better at The Times crossword.

Enjoy your Friday feelings ...

Sent from my BlackBerry® 9700 wireless device

bleurgh and meh

2010-10-13T22:06:00.000+01:00

Almost forgot about you out there.

Last night the nausea and sickness ramped up and I filled a bowl or two. More mercifully, I managed to clear out from the other end as well ... Much needed.

This morning I was pretty dead to the world and nurses, hardly being very helpful or social. Leave me alone mode.

As the hours went on, things got better. I somehow managed to get a shower, even though I can't stand up still due to this low blood pressure. Thankfully there is a seat in the shower, so I got a rinse and a freshen up. It's the small things.

My father came to visit and it was good to see him. Oddly.

This afternoon I have been working on my music website. Well, I say I've been working on it but the actual website is being designed for me by a really cool chap who I have never met who came to me from a music forums and volunteered to help build the site. He's in another country (not even sure where) and so getting things finalised can be a bit tricky. Today my best mate Simon helped us both out and we tied up a load of loose ends. None of this really means anything to you, nor is it very interesting, it's just a rambling point that somehow I'm managing to keep stimulated and thinking.

I'm feeling very grateful tonight for people like Simon in my life. People who just seem to have a never-ending tap of kindness and time for me. When your life exists in-between 8 foot walls, people like Simon make you feel like there are no walls there. True mates.

I'm going now. Grateful for another day without things crashing to hell. I did wonder this morning, but so far ...

Night.

air head

2010-10-12T17:17:00.000+01:00

Afternoon.

A quick report of nothing much to report, other than today's new event seems to be very low blood pressure. I started noticing it last night, when every time I got up to fill a bottle, I noticed that the 'head rush' you sometimes get from standing too quick, never actually went and I found myself hanging onto doors until I got back into bed.

During a very welcome unexpected visit from my best mate this afternoon, I decided it might be a good idea to try to get some fresh air outside, which turned out to be a disaster. I made it as far as the main corridor but clearly being vertical wasn't an option. The nurses got concerned as I clung onto walls and took my pressure whilst I was standing and reported it to be very, very low. So, I was put back in bed, legs raised and more fluid was pumped into me, just to add to my bloat.

I don't know what all this means, i give up trying to keep on top of it all, its easier just to go with the flow and trust they know what they are doing.

Apart from that, I'm ok. Going a little stir-crazy but at least there is some football on tonight. I'm missing making music desperately and also find myself dreaming of sitting by the sea, with a flask of tea and a blanket.

That's about it. Sadly news is hard to come by in a 8 foot square room that you cannot leave without feinting. Hardly a hive of activity and interesting stories. The iPad continues to be the best investment I could have made.

That's it for now then, except to ask ...

Visitors: if you are coming to see me, please, please, please don't bring me sweet chocolates, cakes or biscuits. Nothing is being consumed by me and I have a low appetite for overly sugary stuff. Maybe a few savoury seeds or some spicey indian snack, but honestly, I can't move for chocolate and jelly sweets in here. Sorry if that sounds ungrateful!

im here all week, folks

2010-10-11T16:00:00.000+01:00

As usual, the optomism given to me, was smashed a few hours later.

I'm going nowhere for a week or so, whilst we wait for the big neutropenic drop-off, expected on Wednesday. I will be expected to feel like death and battle some infections and ... Well, we will see.

Then home for a week and then return to repeat the whole process.

I should get unhooked from this machine soon, be able to get a shower and shave and go for a waddle around the grounds and suck down some fresh air.

I'm obviously a little dissapointment but I know in my heart that it's the right decision. If I go home, I'll only be back here in a day or two battling for a bed.

So that's it. I am mentally preparing for a week of cabin fever and a deeper exploration of the NHS dinner menu.

I can't seem to be able to leave you with a punchline at the moment. There aren't too many to be found in these four walls.

day 4 complete

2010-10-11T10:28:00.000+01:00

And so on to the last day of treatment.

In theory I could get out today, but one thing I've learnt about these places is that you're not out until you're out. There is a familiar expression off "we'll just keep you in for one more night..."

I'll take the advice of the chief heomotologist later, who will be doing his rounds. In the meantime, I'm still be pumped with a good 5 hours of fluid to go.

I feel a bit sick, tired and very fat. I feel horrid. I'm still 80kg and my normal weight is 72. I'm being prescribed some pills to help take off the bloat.

One thing I can tell you, it can't be water retention, as every 50 mins I woke last night to 'piss in the bottle' (every output has been collected over the last 5 days). I reckon I filled 5 litre bottles last night, as my body tried to pump out this non-stop fluid poison. The broken sleep doesn't really help matters, but again, I'm not too bad.

I really want a shower. 5 days of being tied to this damn machine has meant the closest I've got to a wash is using baby wipes. I dream of a spa treatment, a sauna and a gentle swim. I'm naturally quite a clean person and lying in a damn bed without the ability to freshen up adds to the 'meh' of it all.

Still, onwards. It will be good to get out of here, get a bath at home, a nap, get some lunch hin town and see some friends. If I can keep well during the neutropenic phase I will be very, very pleased. We shall see.

The depressing thought that niggles at the back of my mind, is that even if I do get out today or tomorrow, it will only be a matter of days before I'm preparing to do the whole thing again.

You almost get used to it. Almost.

day 3 complete

2010-10-10T13:25:00.000+01:00

Another day over.

I don't really know what to write. Just read yesterdays entry. The routine is the same.

I feel a little more listless and tired today and I woke with a sore throat, but no real complaints.

However, my head has turned into the shape of a perfectly round orange, just like Karl Pilkinton's. The steroids have have a profound effect on my weight. I hate it. It reminds me of how I used to look like when I was a bloated drinker. I've been assured it will reduce in a week or so.

I guess i've been lucky in my response to the treatment. Mild nausea and some tiredness is as bad as it has got so far. Boredom has been kept at bay, but I am beginning to miss some fresh air. I have been inside for a week now and I wonder how long it will be before cabin fever sets in. Best not to think about it too much.

I'm going to sign off. I'm not really feeling like writing. It's just an update for you to put your minds and rest that I'm fundamentally OK, just a little flat mentally.

Speak soon.

fat bastard

2010-10-09T11:19:00.001+01:00

Bloody hell.

I've put on nearly a stone since I've been here. All steroid bloat and water retention. I feel horrible.

I will come off I've been told. I hope so, its ruining my cancer-chic look.

day 2 complete

2010-10-09T10:08:00.003+01:00

I guess the problem with being isolated from the loonies is that there is very little of any comedic value to report. Hence the lack of blogging, for there is not too much to say, save to report that my life is now a steady interruption of various doctors, nurses, cleaners, porters, bed makers, urine-bottle collectors, specialists, blood-takers, dinner givers and bloody well-meaning visitors.

Barely 30 mins goes by without someone wanting something from me, or to give me something. I've lost track of what Im taking orally now, but it's an impressive list. Then there's the chemo bags and the stuff they pump into the central line direct.

Some odd new things for me during this treatments. Steroid eye-drops three times a day. Mouth wash for ulcers. Stomach steroids potions. Eye of newt etc.

I've just retched my first retch. Hardly a bowl-filler but the first signs that my body is beginning to wonder what the fuck I am playing at now.

Overall though, I'm still healthy but speaking to one of the Big Men yesterday, he said that the real troubles won't start until after the treatment have finished. Then the fun will start as this stuff kills bone marrow and white cells. There will be debate as to if I should bother to go home and come back when things got bad or stay here and wait for the infections to start. Hmmm. Time will tell.

It's going to be a long stretch either way. Visitors are great but I'm still in here, tied to the machine and the bed 24/7.

Still, so far, so good. I'm not in shivering, pukey, shit-hell yet and that's about all you can wish for.

A day of sport on the radio helps pass the time. Utd at 15:00. It's the small things that matter.

------------

Oh, for fucks sake. The premiership football is not this weekend due to the sodding midweek Euro qualifiers. As i said, it is the small things that matter. Bollocks.

day 1 complete

2010-10-08T08:04:00.000+01:00

The first 24hrs of chemo is over. Its been all OK so far, with no real sickness but I have woke with a banging headache that even my Oxy cannot shift.

Yesterday was pretty much filled with non-stop visitors after lunchtime, which was appreciated. If I can't shift this stupid headache this am, I don't know how appreciated they will be today. Call ahead ...

And for this reason, I'm not going to write much now but just to say that I'm so far OK and haven't descended into a vomiting chemo-coma. I suspect I won't stay this OK for too long, but you never know, maybe I'm getting used to all these poisons.

Thanks for all the messages of lurve ...

Sent from my BlackBerry® 9700 wireless device

sugar, we're going down swinging

2010-10-07T08:16:00.000+01:00

And so it starts ...

Sent from my BlackBerry® 9700 wireless device

vroom room

2010-10-06T19:51:00.001+01:00

Yes.

The boy has done very well here. The room is great. Spacious. Own en-suite with shower, toilet. Nice big window, well ventilated, so much cooler with windows that actually open (rare in these places). The room is at the end of a corridor, with a proper wooden door that can keep out zombies.

I have laid out my extensions leads out in an obsessive row and we have iPad, laptop, blackberry and DAB radio all at arms reach.

And as an extra treat, chemo 'proper' doesn't start until first thing tomorrow, so I get a night to unwind and enjoy the relative silence.

My Taurean stubbornness pays off bigtime.

As I said before ... dont fuck with my Chi.

the last supper

2010-10-06T18:05:00.000+01:00

Probably the last meal I'll keep down for a while. Enjoy it with me ...

Sent from my BlackBerry® 9700 wireless device

no way out

2010-10-06T14:39:00.001+01:00

Sadly, it looks as if my time is up and I'm going to have to start this sodding treatment, despite all my best efforts to avoid it. Hydration is starting now and will take 6 hrs, followed by the main event ... a 5 day chemo-blast. Five days suddenly seems like a very long time indeed.

A side-room is being prepared, so I will be able to puke, shit, cry, swear and start fist-fights with pretentious doctors without disturbing the men who live in cats.

On the plus side, the pre-chemo rest has done me good. I'm feeling a lot better than I was when I came in, so hopefully I'm starting from a fitter place. On the other hand, no amount of fruit salad is going to help you out in the event of nuclear fallout, but it's a ray of hope I'll take with me into the darkness.

Wish me luck. There's nowhere else to go but down ...

please sir, can I have some more ...

2010-10-05T18:10:00.000+01:00

As my last post containing a picture of food seems to draw more comments than any of my heartfelt pourings, I thought I'd share this evening vege-cottage pie with you all.

Sent from my BlackBerry® 9700 wireless device

time passes

2010-10-05T14:39:00.000+01:00

I am still waiting for a side room.

I think the doctor hates me. I asked him.

"it's not my job to like or dislike you".

"I'll take that as a Yes then"

I'm pretty sure he's a virgin.

-----------------

I've offered to go home many times but they seem convinced this side-room will appear anytime now. I think they are waiting to see what happens first, room availability or expiration of chemo drugs, which have a short shelf life.

It hasn't been a complete waste of time as I've had some pre-treatment stuff dripped in and some fluids. I also had a temperature of 38.7 yesterday, which gave the nurses something to do.

People might wonder why I want a side-room so badly.

Nurse: MR JOHNSON? MR JOHNSON!
MJ: gnurmph
Nurse: MR JOHNSON...DO YOU LIVE IN A HOUSE?
MJ: gnurghm
Nurse: DO YOU LIVE IN A HOUSE? OR A FLAT?
MJ: I live in a cat
Nurse: You mean you live in a flat?
MJ: no, I live in a cat
Nurse: you live in a cat?
MJ: I live in a cat

Later I heard the nurse tell the sister "we think he lives in a care home ... Or a cat"

This is why I want a side-room.

dinner time

2010-10-04T13:15:00.001+01:00

Mmmmm.

Sent from my BlackBerry® 9700 wireless device

deal or no deal

2010-10-04T12:25:00.000+01:00

There's nothing quite like the thought of the NHS having to pour £10,0000's worth of chemo down the toilet to make them suddenly realise that perhaps there is a side-room available tomorrow after all.

I think I just saw an old lady being pushed out of a side-room window and some doctors set fire to her possessions and medical records. Just making space.

I've got to sit on the ward of the living death until tomorrow, where they will now apparently have a room for me. I was fully dressed, discharged and ready to leave. I honestly believe they thought I'd crack and say "ok, I'll have it here".

Fools. Don't fuck with my Chi.

It's pretty disorganised here. I have to beg, remind, buzz and argue my case just to get my painkillers. Despite them giving them to me a few days ago when I stayed, it would appear there is no record and I have to jump through hoops to get my Oxy. Which I need. I should have bought more in from home, but last time I did that, they locked them away and I never saw them again. Right now, some student doctor is lacing a student nurse's drink. Probably.

So, after a shitty night and a totally confusing morning, the deal is that if I park my ass here until tomorrow, I'll be moved off and the real pain can begin.

Everything. And I mean everything, is hard work.

plan B: run away

2010-10-04T10:40:00.000+01:00

I'm bailing out.

There is no way on Gods earth I'm doing my heaviest chemo treatment yet, stuck in the corner of a hot ward, surrounded by the shouting living-dead mentalists, with next to no privacy.

Fuck. That.

I am out of here.
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flushed

2010-10-04T10:21:00.001+01:00

They can now flush one line and get a trickle of blood from it. So they started the rehydration drip, which seems to have gone in. I'm glad I refused the canula.

I am angry still. Just been told there's no side room. I have been fitted up. It was so obvious all along. They want to start chemo soon. I said I need to think about it.

I'm so fucking cross. I could have been in London for this but I said I'd try it here if there was a sideroom. I've been told I can go home and try again next week but still no guarantees.

Half working Central Line and being reduced to a vomiting, sickly pile of nothing on this desperate ward. Am I allowed to scream like a child? I don't know what to do. I HATE IT HERE and it hasn't started.

Words fail me.

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dead line

2010-10-04T00:55:00.000+01:00

I can't believe it.

My Central Line doesn't work. It is blocked.

Every 30 mins,nurses have been trying to draw blood from the lines. Both appear clogged. Can't flush. Can't draw.

They want to stick a canula in me to administer hydrating fluids. I have refused.

I've been pretty fucking good at holding this shit together but I'm losing the will to do this now. I am so angry. I went through all that shit earlier in the week so the word canula wouldn't exist.

I want to go home. Oddly, for the first time in a long time, I want to cry.

back to my bedlam

2010-10-03T20:11:00.001+01:00

Well, I'm back. Back on a bed on the same ward I was on but a few nights ago, staring out at a new collection of soon-to-be-dead-no-matter-what-treatment-you're-given faces, with an average age of like really, really fucking old, dude.

Tonight I sleep with the masses, on ward. Tomorrow, they shall find a side-room for me, although every time someone 'confirms' this, they have the look in their eye of a teenager who promises to be home by nine.

I'm in a really good mood. Can you fucking believe that? I feel better than I have for a while and found myself wanting to fire up the ol' music studio today. The knock to my system of the Central Line procedure is fading and some energy is returning. Patchy still, but better than it was. This coming week would have probably been quite productive but, as I am becoming used to now, the minute I am OK, 'they' smash me down again.

And how smashing will a week of non-stop chemo be? Probably quite smashing indeed.

I guess there's only one way to find out. Deep breath.

Here we go again ...

jump leads

2010-09-29T16:47:00.000+01:00

Back home. Silence is golden.

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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we apologise for the delays on the central line ...

2010-09-28T22:18:00.001+01:00

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.

why am I here?

2010-09-27T19:46:00.001+01:00

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?

so, what's next ... ?

2010-09-23T23:37:00.006+01:00

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.

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.

That's about it. I'm not feeling very writey today and my words are all a bit rubbish. Must be the new drugs. Anyway, I will not make more words happen as they are sounding wrongful and misunderstooding.

I wonder if I'll every have a normal day again?

let's not start sucking each others cocks just yet ...

2010-09-22T18:23:00.001+01:00

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 ...

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 ~~bog~~ 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?

newsflash

2010-09-22T12:45:00.000+01:00

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 ...

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three days and three goals later ...

2010-09-19T23:39:00.005+01:00

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.

fyi

2010-09-17T14:16:00.000+01:00

"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.

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iThanks

2010-09-16T23:57:00.000+01:00

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..."

you might want to sit down for this one ...

2010-09-15T15:42:00.000+01:00

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

Results tomorrow ...

2010-09-14T22:42:00.000+01:00

... 9am.

Stay tuned rubberneckers.

Sent from my BlackBerry® 9700 wireless device

whilst you are waiting ... some music

2010-09-05T15:21:00.000+01:00

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

... 4 days off

2010-09-02T17:27:00.004+01:00

(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 ...

4 days on ...

2010-09-01T19:42:00.000+01:00

(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.

just a little nap

2010-08-26T11:45:00.000+01:00

Go to bed at 11pm on Monday night.

Wake up at 7:30pm Tuesday evening.

Move to sofa

Go back to bed at 11:00pm

Wake at 8:00am

Still tired.

ever the optimist

2010-08-24T19:35:00.002+01:00

The problem with this damn blog is that now most my family read it. And the problem with that is, if you put how you really feel sometimes, they will inadvertently worry.

Let's say hypothetically, you're sick of feeling pain, sick of having to leave work to get into a hot bath, sick of feeling lethargic and not having the energy to even create music, sick of chemo, cancer and talking about it, so sick of everything that you wonder why the hell you bother getting up ever day to face another round of the battle, so sick of the pills, hospitals, pain and fucking BOREDOM of it all .... well, you'll find yourself not posting it quite as brutally honestly as that, as someone is bound to then ring you, concerned about your well-being and mental state. Whereupon you'll have to reassure them that actually you're OK and 'battling on' when the last thing is the world you want to do is talk to anyone about your sodding illness.

So you don't. Because you don't want to worry them. Instead, you fill your blogs with some humour and optomism even when you don't actually feel humorous or optimistic. You don't actually write that if someone had left a gun on the pillow, you'd probably have taken your head off by now, as that could potentially cause worry amongst those that love you.

No, it's best to balance each blog with a healthy dose of self-depreciating humour and if possible, a video or some music. This keeps everyone happy.

Hey look !!! I'm in this promo video. My life is fucking great! Yay!

bedroom artists in desperate need of fans - apply within

2010-08-22T15:14:00.001+01:00

Hello ...

AS you might now, my musical artist name is "Delete All Contacts" and I'm trying to sort out a Facebook page for this. Once a certain amount of fans are reached, Facebook will allow me to have a easy to remember link to the page - something like facebook.com/deleteallcontacts.

However to get that, I need more fans and 'liking' ... so can I ask all of you with Facebook accounts to hop along to

http://www.facebook.com/pages/DeleteAllContacts/97729335420

and become a fan by 'liking' the page - I'd appreciate it. I'm uploading my vidoes, photos and newer tracks as we speak.

Thanks.

the boy with a thorn in his side

2010-08-20T15:46:00.002+01:00

Christ ... what a week. I say that like it's over, but it's not over, but it's still been a hell of week.

It started last Wednesday, the day before Chemo. I woke and something inside had broken. I'm not sure why, but I felt looooooooooow. Actually, I do know why, what a stupid thing to say. It was because I had Chemo the next day and whilst I have been fairly good at facing The Evil One square-on recently, I found my will had broken somewhat and bought me crashing down into a pit of self-pity and unwillingness to carry on with this ridiculous regime.

However, like a good boy, I took my medicine as Thursday and Friday melded into one. I slept a lot, using a few Lorazapam pill to get me over the worst. Long, trippy dreams - night into day, day into night. I was just 'not here' until Saturday, where I started to piece things together again. To be honest, it wasn't until Sunday evening that I felt almost human again ... and that's when my ol' friend The Pain came knocking on my door.

The problem comes when I stop taking my steroids after my Chemo. About Monday. Then *it* kicks in.

I've documented The Pain before, but if you've just landed here or are out of the loop, then The Pain is basically *something* that's going on in my 'insides', to the left of my stomach, pretty much where my spleen used to lay - suspected adhesions, or perhaps the surgeon assistant left a cheap earring in my intestines, who knows?

The Pain manifests itself like someone squeezing an intestine with a flat pair of pliers and then holding onto the squeeze for hours. Sometimes giving it a twist for fun. The Pain is one sick bastard and The Pain was very, very bad this week. The attacks tend to happen at either 2:00am or 4:00am - then again at lunchtime and then the big one seems to come at 5:30pm. These evening sessions has pretty much ruined every night at home I've had this week.

For example, I was found by a work colleague on Wednesday night in the company car-park. I had left 25 minutes before him, but I hadn't made it into my car, but was on tips toes, face scrunched and hugging my car roof .. too painful to drive for a good hour.

And this has been my week. Pain attacks interspersed with working. It's not a lot of fun, but then again, Cancer apparently isn't ... and although this is some secondary ailment, I'm still firming pointing my accusing finger at Cancer for inviting his best friend, The Pain, to the party.

The solution? God knows. Lots of painkillers and lots of gritted teeth. On the plus, my pain tolerance is getting pretty fucking good and once I'm out the other side, I should be able to earn a supplementary salary entertaining people by walking across hot coals whilst sticking daggers in my side, like a Victorian circus freak.

The official verdict is that nothing can be done whilst I'm still receiving Chemo and that could be for a while longer. So it's daily pain management for me.

I have another 'radioactive' PET scan on 31st of August, where The Powers That Be will be able to see how I'm getting on and how many more treatments I will need.

On the note, I'm not overly optimistic about stopping any time soon, as during my last check-up, my doctor found a (new?) 'pea-sized' lump under one armpit and one a bit bigger under the other. These lumps are all part of the lymphatic system, which is cancerous, so it would suggest that whilst on one hand I am obviously responding to treatment (I *look* a lot better for a start, even if I'm not feeling great), there is still work to be done.

So. Onwards. Clenched fists and all that. The weekend is welcome ... Pray that The Pain doesn't ruin it for me too much. I'm off to the iMax tomorrow lunchtime to see Toy Story 3(d) and the rest of the weekend will be spent watching 'soccer' and learning about synthesis/sound design.

I hope that you lot out there are well and fine and sorry to those that I've been ignoring recently. It's hard to chat/talk/email/post when you're focusing on The Pain. You don't want to talk about it and you get sick of explaining it - you get frustrated and snappy and ... well, 'best left alone' is probably hitting the nail on the head.

However, we'll speak soon, no doubt ... it would appear that I'm not going anywhere for a while.

-----------

Oh yeah, if anyone wants to help me with four days washing up, it would be appreciated, as my apartment smells of baked beans.

With friends like these ...

2010-08-17T20:16:00.001+01:00

Ah, how sweet. Its nice to have friends who send me poignant gifts in the post.

Love you Simon ...

I LOL'ed hard.

Sent from my BlackBerry® 9700 wireless device

Oh, that much

2010-08-11T20:29:00.000+01:00

I really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, do not want to go for sodding chemo tomorrow.

fed up (again)

2010-08-07T14:29:00.000+01:00

I'm fed up.

I mean, overall, things are kinda OK. But I'm fed up with it all now. Fed up with chemo, cancer, pain, stomach problems, whinging, blogs, feeling tired, being optimistic, being unfit, being bald, talking about it, pills, people talking about it and everything that comes with this tedious illness.

The week before last I was in a hideous mood. The pain in my gut had become a daily grind. The pain nurse has put me on a mild opiate (Tramadol) to mix with codeine, paracetamol and diclofenac as I see fit. Sometimes it feels like putting a sticking plaster on an axe wound but overall, I guess it's been better. But last week, I was ripping peoples heads off as they tried to converse with me. The only description that I could come up with was it was like someone talking to you about their summer holidays whilst someone had parked a car on your foot. Still, I managed to crawl through the working week without too much downtime and it was followed by a wedding which was a good day out and cheered me up.

This last week has been a mixed bag - some very good, busy days but some very, very painful moments. On Tuesday, I made the mistake of going to the cinema to see 'Inception', which was two and half hours of utter bollocks, not helped by the fact my eyes were watering with stomach cramps/pain. Thankfully on Thursday I was taken to see 'Shrink', at an amazing retro cinema called 'The Rex' in Berkhamsted, which has been renovated in the style of a 50's cinema. I can't recommend this place enough. The film restored my faith in Hollywood too.

However, I woke on Friday (yesterday), went to work for about 2 hours and had to leave. I had no energy at all, I was falling asleep at my desk. I went home, fell asleep in about 5 minutes and slept until 8pm. I woke, still feeling tired, went back to bed about 11:30pm and slept for 11 hours. Today I have yet to get out of my bedclothes and I don't think I will. I'm not sure what is going on, perhaps I've overcooked it, forgetting that my energy levels are still limited or ... oh, I don't know. But it's bloody annoying.

The good news is that I have a totally new thing to moan about. The tips of my fingers have gone numb. I was warned about this at the start of chemo, but it's only just started to happen. The ends feel tingly and numb - apparently this is semi-permanent and may return to normal in 5 or so years. Not to worry, I only really use the tips of my fingers for a couple of things - typing on a computer keyboard or playing the musical keyboard. *sigh*

So as you can tell from the complete lack of effort with my blog and this rambling mess, that I am fed up. I am probably one of the few people in England that is enjoying the downpours of rain outside the window this weekend. Sky Sports is showing some football, returning feelings of the end of summer and I have the 'shut the world out' feeling where I wish it was dark outside. On weekends like this, you don't want the sun to make you feel guilty about your downtime.

Saying that, I'm off out tomorrow for what could be a great day. Thanks to a great friend at work, I've got a pair of excellent seats for Manchester United vs Chelsea at Wembley Stadium - The Charity Shield. This should hopefully shake me out of my funk and be a good day out ... providing my insides don't play up too much. And United win.

So, on one hand, life is good ... there is lots to social stuff going on, I'm working more, I'm 'up and about' but on the other hand, there is the hour-by-hour volatile pain levels to deal with and odd days where I just crash out. And now, numb fingers. I guess I shouldn't expect miracles.

Chemo is on Thursday - it's come around quickly. It could be the last one for a while. I am not sure how well I will deal with the news that I have to have more. I'm tired of it. I'm fed up with it. I need a break from it.

We shall see.

silence is golden

2010-08-03T17:11:00.002+01:00

I better say something.

Last week was shit.

This week isn't.

Yin and Yang.

"Don't get cocky, kid"

2010-07-26T20:27:00.001+01:00

... As Han Solo once reminded Luke Skywaker, after he gleefully took out his first tie-fighter. Han somehow knew that a world of shit still awaited the young Jedi.

Not moments after posting my jubilant post yesterday, my insides felt the familiar vice like pinch on them and its been that way since 1am yesterday, ensuring quite literally no sleep and a day of saying "for fucks sake" a lot.

Eating is hell, drinking not much better. These sodding adhesions are literally, a pain ... Hot baths, lots of useless pills and gritted teeth are back on the main menu, with grumpiness and swearing for pudding.

Bon fucking appetit.
Sent from my BlackBerry® 9700 wireless device

R-Chop 3

2010-07-26T00:03:00.000+01:00

Well, as the weekend draws to a slightly sticky-warm ending, I find myself three days into my third R-Chop session.

It's been even more gentle on me than ever. In fact, I've probably taken only half the amount of antiemetics that I normally take. The chemo has, however, managed to cement my insides together and I'm running on a 50:1 input-to-output ratio again. Something must give at some point. If you see me running, do not follow.

I had a rather underwhelming appointment with the surgeon before my R-Chop treatment. It turned out that I just met his assistant - someone I had met before - a nice guy, but still a middle-man. We had a chat about these adhesions, which he seemed to be in agreement about but, as expected, there was little to do now, except take on his worldly advise of "try not to get constipated" and meet again in three months once the chemo sessions are over and we know where we stand. I didn't really expect much could be done at this stage ... at least it is logged and recorded as an ongoing concern. I am still trying to fathom out exactly how not to get constipated. Stop giving me fucking chemo would seem to be the obvious answer.

But apart from that, treatment-wise, it is, as our American friends say, "all good".

In fact, despite the fact that I know I'm looking at a huge drop-off around Wednesday, when the steriods finish, the stomach pain kicks-in and I will return to being a moaning bastard, overall I'm getting optimistically excited as after my next chemo session, we get to 'stop and scan' - meaning we'll take another CT-Scan to see what lies insides.

I know I'm winning this battle. My highs continue to get higher and my fitness, 'looks' and health are returning. I'm able to work longer, rest less and really enjoy my weekends and free-time, finding excitement in life again.

And that's saying something from this miserable bastard.

Whilst I don't *really* expect an end to this R-Chop this time around, I am optimistic that by the end of this year, I will be getting a break from the ongoing poison-recover-poison routine.

As they say in certain rooms that I used to frequent ... "a day at a time - more will be revealed".

"There Is Always Hope" - video

2010-07-24T22:16:00.003+01:00

Hmmm ... this seems to becoming more of a music blog than a KemoKid blog recently ... Still, just know I'm well enough to be creative and rejoice.

A (slightly rushed) video for you ... enjoy.

*tip: change that '360p to 720HD' and then click the full-screen 'X' icon to the right. (You won't break it, Jimbo)

"There Is Always Hope"

2010-07-18T21:23:00.001+01:00

Here is a rather chilled tune I created this weekend ... Plug in some headphones, turn it up and close your eyes. Enjoy ... There Is Always Hope by DeleteAllContacts

cancer stats

2010-07-15T18:08:00.000+01:00

A quick blog.

I recently read a 'cancer survival figures' article on BBC News that some might find interesting, as it has the 10-year survival statistics for a range of cancers, (including my own Non-Hodgkins Lymphoma, for the morbid).

I try not to get too hung up on statistics, as they are out of date the moment they are published, but it's certainly interesting to find out what cancers you definitely don't want. Pancreatic, for example. *shivers*

And Lung cancer? ... 5.3% survival rate. Smokers reading this should feel a twinge on guilt right now. Yup, that does means you.

Right ho ... here's the link

RIP John Worsfold

2010-07-13T19:46:00.002+01:00

Thank you John for being so supportive of my recovery from alcoholism, my battle with cancer and all the ventures I embarked on. And thank you for looking after Mavis for all these years.

You were always a kind, bitingly funny, generous and warm man, who I really enjoyed getting to know better in the last few years.

I won't forget the holidays you took me on as a child - and how patient you were with this precocious little brat.

My only regret is that we lost contact during my wilderness years, but it was a pleasure and a joy to rediscover you in later life.

You will be sorely missed - I've lost probably the biggest blog fan I will ever have. You even printed out the pictures of my spleen - now that is a true follower. I hope somewhere you get to read this.

Rest in peace now, John. You led a great, great life.

See you soon.

S.S.

get knotted

2010-07-13T19:40:00.003+01:00

A misery blog.

I haven't written one of these for a while.

I'm fed up.

I'm fed up because I'm in pain. And I'm very, very bored of being in pain.

The latest bout of pain comes from my 'guts' - I think it's the small intestine to be precise. It's not really a new thing - it's been on-going since my operation in one guise or other, but seems to getting worse, not better. The symptoms range from a sort of short, very sharp, indigestion 'squeeze' in the ol' tubes, to a feeling like a clamp has been placed around your insides, or someone is treading on them - which can last for about 45 mins. On top of these feelings, I get a referred pain in my shoulder - a nerve pain - exactly like I used to get when my spleen was growing. In fact, it's only the area where my spleen was that I'm getting all this pain - the other side is fine. To be honest, it's almost like I've got the same issue I had before - I can't stand up properly (hunching to protect the area), the pain is 'draining' me so I'm more tired and I can't sleep on one side. It's like the spleen never left me. Perhaps I just miss it and it's all a psychosomatic pain - like when people can feel their arm after it's been removed.

Anyway, as I was trying to describe the intensity of the pain at its worst to someone, I felt I nailed it when I said "if I was a 10 year year old kid, I would be screaming and crying". ie. it's pretty bad. It will stop me driving for a while, whilst I sit in car repeating the mantra 'fuckfuckfuckfuckfuckfuck fuckofffuckofffuckofffuckoff fuckfuckfuck', whilst wearing down the leather on my steering wheel. The police have yet to be called.

The operation was a long time ago now. I haven't had a period of being able to painlessly eat and, er, poo since. I've had better times than others, but there has always been something 'up' and after this weekend's new found gear of pain, I'm officially fed-up.

I took some positive action though, I took a trip to the GP. I actually have an appointment to see the surgeon who performed the operation next week - in a kind of 'follow up' meeting, but I though I better see a GP to see if there was anything he suggested in the meantime.

The GP was great to be honest - he read my notes and listened and explained in a very clear way that it's quite possible that I have adhesions - and reading the Wiki's about them, this sounds right. They are, apparently, 'fibrous bands' that form after operations and can catch, hook and hinder the (in my case) bowel, intestines etc. Apparently women can suffer from these after a hysterectomy. The GP wrote a letter for my surgeon with his diagnosis.

So what can be done? Well, guess what. Yup, they can open you up and cut them. Which of course, means another operation, which could then mean ... you get the idea. My doctor said that the medical profession general turn people away a few times, hoping it will get better, then eventually when the pain is too much ... they operate.

All of this is conjecture at the moment really - I will have to wait until next week to speak to my surgeon. But I shall be letting him that I am, literally, not happy and that I am, in fact, very fucking fed-up.

In the meantime, I have been given some anti-spasm drugs that can stop the bowel et al from, well, spasming - I had these when I was in the AAU unit. More drugs. Lovely.

One of my favourite phrases at the moment seems to be "but if it wasn't for that, I'd feel fine" and this situation is a shining example. This is a non-chemo/cancer related incident and "if it wasn't for" the bloody pain in my guts/shoulder, then "i'd feel fine". To the point where if I had a proper functioning internal system, I would be down the gym, trying some light exercise and weights. The rest of me is in good form.

So that's the end of my latest misery blog. I'm fed up mostly because one of the few pleasures that a sober, drug-free, vegetarian, celibate, cancer battler has left on planet - eating - is being ruined by a dysfunctional internal system. Balls.

It would appear, I was born to suffer.

I will stay up on this cross for you a while longer yet.

79p well spent: "Traps" on iTunes / Amazon

2010-07-10T22:36:00.004+01:00

You can now buy my little song, 'Traps' on iTunes and Amazon. The video is somewhere below.

Just search for 'Delete All Contacts' either site and you should find it, or follow the links below.

iTunes link

Amazon MP3 link

I'd appreciate some reviews too (on iTunes/Amazon). Just think of it as a 79p subscription to this blog ... surely a years worth of my bad news and whinging is worth 79p? "The Times Online" charges a pound a day for their bad news and whinging nowadays, so consider this a bargain.

Enjoy the song. Or not. To be honest, I don't really care.

Just buy it.

as a coot

2010-07-07T11:04:00.001+01:00

Well, as you may have heard, my hair finally fell out. I started off by having a very short 0.5 graded 'buzz cut', but that soon started to look patchy and, well, cancer-like.

So yesterday I took the plunge and did the proper thing ... it all came off.

I'm now looking somewhere between Shootings Star's 'George Doors', poisoned Russian spy Alexander Litvinenko, Tim Roth in 'Made in Britain' and a coot. Which are apparently very bald.

I guess this is no time for vanity but after looking through photos from last Summers' diving trip - where I was tanned, healthy and with hair - I cannot help but think 'Jesus Christ, what the hell happened here?'.

However, I am grateful that I'm not a female - that must truely be devastating. I can laugh at myself and get away with looking like this quite easily around these parts, but it seriously must be heart-breaking for women to lose their hair in this way.

Apart from the hair-loss, I'm feeling 'OK' although I've just had a very rough night with 'tummy issues', which I won't go into here. The new R-Chop regime is easier on me overall, but still comes with its up's and down's ... but overall, I'm pleased with the progress and compared to how I was with AVDB treatment and to how rough I felt when I was recovering from my operation, I cannot complain.

I'm writing shite today - I'm tired and nothing is flowing very well, so will sign off now, with a self-taken snapshot via a bathroom mirror.

Slaphead x

more traps

2010-07-04T13:55:00.004+01:00

Here's a simple video I made this morning for my "Traps" single, which should be appearing for download from iTunes, Amazon and others in the coming weeks. I'll keep you posted and you can all reward me for my obvious endless talents.

Don't forget you can change the setting to '720p' once you've hit 'play', which gives better quality. And then hit the 'Full Screen' icon.

A simple video full of stolen, cheesy images from The Internets, but hey, fuck it ... what did you do this morning at 8am, huh?

Enjoy ...

some sad news

2010-07-02T22:53:00.000+01:00

Sad news.

My lovely grandma's husband (who I consider to be a 'grandad') is very ill in hospital. It's quite serious.

They are both readers of my blog and have been so, so, so supportive of everything I've been through, from the recovery of my drink/drug issue and through my current little adventure.

My thoughts and prayers are with him.

Sad days.

R-Chop 2

2010-07-01T20:48:00.000+01:00

Well, that's over.

Long day.

Back home.

I feel slighly fed-up, slightly sick ... but I'm OK.

Bed soon.

hair today, gone tomorrow

2010-06-28T13:06:00.002+01:00

Ah well.

It finally happened.

Over the last 48 hrs my hair started shedding like a moulting cat. I could just lightly grab a wad, give it a slight tug and out it all came. Running my fingers through it and giving it a shake, would leave leave my hands as covered in the stuff.

The new chemo (r-chop) contains a lot more of the 'red drug', which is the one that makes you lose your hair, apparently. Still, how odd it should happen nearly three weeks since the treatment.

The issue has been resolved by a quick trip to my friendly local salon where they kinda gave me a free buzz cut all over.

I now look like the traditional English Football Yob, which on a day after our pitiful football team were pathetically kicked out of the World Cup, fills me with a kind of duty to go and throw some plastic chairs at some foreigners.

'Av it.

Sent from my BlackBerry® wireless device

and then there are good days

2010-06-25T12:23:00.000+01:00

I am elated.

The last two days my health has shot skyward. I feel almost perfectly normally. The stomach still grumbles but I all my 'guts' have deflated. I can yawn fully without pain, I can cough, I can inflate my lungs fully (which I do 'just for fun'), I can eat very hot curry from an indian restaurant two days on the spin, I can poo properly, I can walk faster, I can almost stand up straight, I can sleep all night, I can feel happy that's Friday ... I feel fucking great.

I want to drive at 110mph listening to Jimmy Eat World, I want to spend a million pound, I want to dive with manta rays, I want to run to run a marathon.

And these, I guess, are the good days.

Next chemotherapy treatment in 6 days.

Sent from my BlackBerry® wireless device

a poem

2010-06-23T20:39:00.000+01:00

At home,
Curry on way.
England win,
Happy day.

release papers

2010-06-23T10:29:00.000+01:00

I was moved last night to a room with a toilet and shower. Civilisation.

This morning I have my release papers. They are concerned my temperature still keeps going up to near 38 and I have to take paracetamol but the agreement is I can manage this out of hospital.

I'm sitting on the bed, waiting for my prescriptions, which will take a few hours and I'm under instructions to report back Friday.

My stomach is still a bit sore and yadayadayada but fuck it all, I should be out of this cell in a few hours, the sun is out, I can eat some nice food, England are gonna smash home a hatful of goals and I will be able to have at least at few days of not being injected, poked, prodded and examined.

Freedom.

Sent from my BlackBerry® wireless device

one more sleep?

2010-06-22T11:27:00.000+01:00

I saw a doctor this morning. She did the tapping thing on the back that they do so well and said ...

"Well, you do have a lot of fluid in there"

I have no idea what/how this fluid is all about. She explained that it could have been there since the operation. In itself, it will dissipate but it can settle in small pools where bacteria can grow (hence infection). A normal healthy body will sort that all out.

The good news for me is that they really don't want the drain this fluid. *IF* my temperature stays down and my white blood cell count rises (which it should be now I've had 4 days of booster injections) then my body should sort this out.

My temperature this morning was 36.5. That's good, although last night it was 37.7 - which is getting close to the 38 'too much' zone.

My blood has gone away for more tests this morning ... hoping for a high white cell count and a day of low temperature and I 'should' be allowed out tomorrow afternoon.

But to be honest, I've given up hoping about my release date now. It's always pushed back by a day or half a day. The only time I'll realise I'm out is when I'm sucking down some air that isn't flavoured with NHS food, commode odour and death.

dignity fail

2010-06-22T11:05:00.001+01:00

*WARNING: this blog contains information about my bowel movements. You don't have to read it. I'll create a separate blog with a health update*

From Friday pm to Monday pm, I was in a pristine room, with a pristine en-suite.

On Monday pm, I was moved to a small, square, old room with no toilet or shower.

I'm not allowed outside my room. The communal male toilet is a long away and I would have to pass many sick people.

So, I have a commode. A commode is a chair with a liftable seat. Under the seat is a cardboard disposal six inch deep bowl.

This is your toilet.

On Monday eve, I was given two suppositories and some magic liquid to help my shift the now painful situation I was in.

After a few hours, all hell started breaking loose. With the emphasis on 'loose'.

So, you do what you have to do. Into a cardboard tray suspended under a hole in a chair. And then you press a button to call a nurse. Sometime later, a man will come and make small talk. He will lift the lid and HE WILL LOOK AT IT and then take it away. 'Sometime later' has ensured your small, warm room is now filled with the kind of smell you don't normally get this side of the equator.

And of course, because you're backed-up with a weeks worth of supply, this isn't going to be a one off event.

And it's not.

Dignity is a thing that you don't realise you have until they take it away.

The 'good news' is that there is better room with a toilet / shower that 'should' become available later.

Cross everything for me.

I'm mostly keeping my legs crossed.

downsizing

2010-06-21T17:34:00.000+01:00

Well, here I am.

I've just been transferred from the Hilton Suite to a down-town Kabul Quality Inn Budget Room. Hideous décor, no toilet and hot. On the plus side I have a lovely view of the air conditioning units on the roofs of Watford General.

There are the 'pay £4 a day' TV's in these side-rooms, but I'll stick to the internet for which I have a great reception. Which is about all I care about to be honest.

I'm in some pain now with the throbbing back issue. There's trouble ahead, I know it.

The doctors are umming and arring about when/if to do my fluid drain. My temperature is up from 36 to 37.2.

I've not expecting to get until Wednesday, although it's been pushed back every day so far. Quite possibly Thursday. Who knows. I'm almost beyond caring. Perhaps I'll become institutionalised. I might start shouting every 7 seconds for the hell of it.

Fuck it, why not .... URRRRRRRRRRGH! URGGGGGGGGGGHHH!

God, it feels quite good ...

URRRRGGGGGGGGH!

better but ...

2010-06-21T14:50:00.000+01:00

Hello. I'm still here. In the room.

Last night I had a bag of blood dripped into me and had a far better nights sleep, which resulted in me waking in a better mood.

I finally found out my blood type. Oddly, it's A Positive. I would have put money on B Negative.

Today's problem is the return of the lack of back door action. My last bowel movement was Friday am. Not good. Doctors have been to explain why this is and are going to prescribe something. My lower back is spasming which is obviously related. As I've said many times before, there's always something.

Then something a bit weird happened.

A knock on the door and a porter with a chair, who wheeled me off to ultrasound.

A few moments later, there was an 'X' in white tape stuck to my back.

"What's that for?", they said.
"So they know where to put the needle to drain the fluid"
"What fluid. I know nothing about this"
"Oh"

Back to the room.

I got a visit from two familiar faces from my chemo Unit - two of my key workers and a new, very friendly doctor.

He told me there was some fluid on one of my lungs and below it but if they can keep my infection/temperature down then they won't have to drain. Further X-rays will reveal more later on. I was also told that they want 48 hrs clear of temperature before I'm released. The means I'm not out until Wednesday.

As I write, I am having more blood given. Another couple of hours of this and then .. as I've just been told ... I'm being transferred to a ward, I'm assuming into a side room - it must be.

Obviously, knowing my bloody luck, this room will be a lead-lined concrete side-room in the middle of a ward, in the middle of a building blocking all mobile phone/3G reception, which will be the end of my internet, TV and radio.

As I've said many times before, God clearly hates me.

Say a prayer for me. I will go fucking insane with no connection again.

Hello World!

2010-06-20T19:19:00.000+01:00

We tried a portable TV.

No signal.

We tried a DAB radio.

No signal.

We bought a AM/MW/FM portable tuning radio.

No signal.

I begged a good friend to bring me my laptop from my house.

I've sat my Blackberry near the window, receiving 3G. Somehow.

I have tethered my laptop to the Blackberry wirelessly via Bluetooth.

I am streaming live radio and able to browse the web from my bed.

You have no idea how happy this has made me. I am able to listen to the World Cup Live, browse the web, listen to the news, chat on my forums.

I can't survive without a net connection. This room has suddenly gone from isolation hell to HELLO WORLD!

*relief*

Now, back to the pain ...

Going down ...

2010-06-20T13:43:00.001+01:00

Balls.

My blood counts are even lower. Both red and white. I'm now ~~neuroplegic~~ neutrophenic and anemic. Both of which are hard to spell.

Blood transfusion coming up and the chances of me getting out tomorrow are about the same as an England / France World Cup Final.

Oh yes, some people have emailed/txt'ed and are confused about the infection and where it comes from. The bottom line is, we'll never know. It could have come from food, air-bourne, anything ... The point is, it would have been something that you wouldn't have noticed if it 'got it', as your immune system would have been able to deal with it.

The sore stomach could be infection, but it could also be post-op stress or the chemo. There's no tests. The infection and the soreness may be unrelated.

Sadly, this could be my world for a while. Chemo will probably always make me neuroplegic and that means I'm wide open to any infection - no spleen is making this situation more of a headache. So, this may not be a one-off.

I hope that helps clear it up. Its hard to get all this across and I'm learning as I go along.

I wish I had more cheery news .. But I'll tell you that I'm feeling 'OK' and am still smiling. If it makes you feel better.

I am currently waiting for someone to drop-off an old-skool radio .. The manual tuning ones .. Because the digital one cannot pick up anything. I have no TV here and if I don't hear some bleeding outside real-world voices and football commentary soon, I may go insane.

I'm glad I'm keeping this blog. I'd never remember all this shit I'm going through .. one day when I'm older I'll look back, read it all and say ...

"I was there."

"And it sucked."
Sent from my BlackBerry® wireless device

Silence is golden

2010-06-19T17:34:00.001+01:00

... (From below) ...

I have been moved rooms. Its much nicer. I am near a window and can hear birds.

If you're thinking I'm a bit mean towards the shouting man, the docs tell me he is in no pain "its just the way he is". He seriously needs to sort that out, its not doing anything for him.

I will, as Depeche Mode once suggested, enjoy the silence.

Long weekend

2010-06-19T16:14:00.002+01:00

... (to follow from below) ...

I'm here until Monday at least. Bollocks.

X-rays reveal a lot of trapped wind (which has been causing pain and discomfort and is more 'serious' than it sounds, so stop sniggering at the back) and a shadow over the left abdomen side - which could be operation scars or a chest infection.

I have to stay until my white cell count is up, as they don't want me leaving and ending back in here straight away, as I'm not 'better' yet.

I am slowly going insane, as the man in the room next to me shouts/screams every 7 seconds and has been doing it since 5am - I kid you not. I've just demanded to be moved or I'll discharge myself (which I won't) but it is literally driving me insane (your sympathy would be depleted by now, trust me)

God tests me on a daily basis. There are no good days any more. Just OK ones and ones like this where you're staring at a white wall, listening to someone shout at the top of their voice all day, as you contemplate the viability of administering a mercy killing using an NHS disposable razor.

Enjoy your weekend ... Please, for my sake.

Close call

2010-06-19T11:53:00.001+01:00

I'm writing this from a hospital bed on my blackberry. Forgive typos and such like.

I'm going to try to cut a long story short.

Yesterday I went to see my GP about my general stomach discomfort. By the time I got to him (4:30pm on Friday), I was in agony in my stomach area. He examined me and realised it was an infection, he took my temperature and it was 39.5 and instantly got on the phone to book me a place at Watford General AAU unit.

I was driven there and quickly put into a isolated room where a long night being pumped with drugs started. Lots of antibiotics, xrays, blood samples and god-knows-what. My temp hit 40.

The danger of all this, is that I have no immunity - low white blood cells from chemo and no spleen. So an infection can lead to septicaemia very quickly and can be a killer in a day. Hence the panic.

The good news is this morning I'm feeling a lot better and my temp is under control and my stomach is a lot less sore. I've yet to see a specialist today who can tell me where we are at but I know I'll be OK.

I imagine they will want to keep me in all day and therefore probably night.

You kinda do start to wonder what the hell you did in a previous life to deserve all this, but I'm still smiling.

Occasionally through gritted teeth, but still smiling.

Sent from my BlackBerry® wireless device

so far, so not bad

2010-06-14T19:03:00.005+01:00

Quick update. Still don't like talking about chemo. Despite choosing to write a blog about it. Oh, the irony.

So, how is the first R-Chop session treating me?

Well, so far the dreaded nausea has been somewhere between 4 to 6 out of 10. Which is good news.

I've actually only been sick a few times since Thursday and then, without meaning to get too graphic, it's more of a retch of acid than a full blow chunk-blower.

My getting-quite-good-at-being-a-dad-Dad came up for a few days and he commented on how much better I seemed and how much food I was eating ... I'm pleased to say that I'm eating well .. and took advantage to shovel lots of good food into me.

Getting things out the other end is proving a little more tricky still ... which can make me miserable ... but I won't dwell on that too much. The anti-sickness drugs don't help that situation either, so I've been really stringent with the amount I take. Which is no bad thing ... the less drugs the better. Gakking down 12 or so pills first thing every morning really is a grind.

I am reaching the end of the first phase of this chemo. I've been taking steroids and various drugs to keep me stable - these are now stopping and apparently this can make you feel worse for a while during a second phase that last around a week, but I can't actually see how it will make me feel nauseous ... tired/drained perhaps, but I am optimistic that it won't be worse 'sickness' wise (my pet hate).

I've been at work today (well, this afternoon) - which is pretty amazing - and have been quite 'on-the-ball' and a lot more 'physical' than before. The frustration comes when I'm piling on a bit of healthy pressure on myself, running around the office, making phone calls, multi-tasking, 'getting moving' - then I suddenly find myself with strange stabbing pains returning in my chest, feeling sick and I then find myself retching in the toilet, whilst my concerned friend brings me water.

Overall though - I'm chuffed to be honest ... I am reserving air-punching celebrations until we've got through a good 10 days - it's only been 4 so far ... but as the title above you says, 'so far, not so bad'.

Onwards ....

R-Chop - first cycle

2010-06-10T20:28:00.001+01:00

I am back at home on the chemo couch, feeling a little nauseous but I'm OK.

The good news is that the treatment was relatively painless. It was a long day, the first antibody took 4 hours to drip in. There was then four big syringes to push in (each takes about five mins) and a whole bunch of tablets.

I wretched a couple of times, feel rough throughout but it was not the drama that AVDB was (remember I don't have a PICC line anymore).

I'm not going to write much, as I don't want to think about as it still makes me feel a bit sick - but just to let you know that 'it went'.

Thanks for the texts, emails.

if it's not one thing, it's another. sometimes both.

2010-06-07T19:21:00.006+01:00

Right. Pay attention. Big news and all that. Game changer.

I've known some of this for a while, but didn't have the details, so I've kept quiet. Now I'm armed with a bit more information, I'm able to pass it on. All in glorious bullet points.

The spleen was removed and tested. Lymph nodes were also taken from my pancreas and other areas.
Tests reveal that all of the above test positive for Diffuse large B cell non-Hodgkin's Lymphoma
On going back to the original lymph node, taken from my underarm back in December, it was confirmed that this was definitely Hodgkins Lymphoma
I was therefore showing two types of Lymphoma at the same time (as we now know that spleen was Diffuse B cell Non-Hodgkin's Lymphoma at the same time that lymph node removed was showing Hodgkin's)
This is very rare ...
... but it has been seen, that the cancer 'morphs' from Hodgkin's to Non-Hodkin's - we simply caught it in the middle of the transition back in December (don't ask me to get any more technical that this)
To sum up this part: I no longer have Hodgkins Lymphoma, I have Diffuse large B-Cell Non-Hodgkin's Lymphoma (which I shall call NHL from now on)
I am a very special boy, huh?

Breath ....

New cancer = new treatment.
Chemo will no longer be the dreaded 'AVBD', but something called 'R-Chop'
It's not supposed to be as 'heavy' as my previous AVDB treatment - side effects are less intense
I start my first session on Thursday the 10th June. A few days.
Each cycle is three weeks
Unlike AVBD there is no 'A' and 'B' treatment. Therefore, each 'cycle' really is one chemo session.
I am booked for 4 cycles before another full scan (ie: 4 x 3 weeks = 12 weeks)
I am limited by the amount of this chemo I am allowed to take, as one of the drugs is basically the same as in AVBD and each treatment raises the dangers of a heart problem. My consultant seems confident than I do have one, despite my protests.

Breath ...

I am currently anaemic
I currently have a large amount of blood platelets - I am at risk of deep vein thrombosis
I will be expected to self-inject the 'white blood cell' boosters into my stomach, 5 days after chemo (for 3 days)
I am at high risk from infection after chemo - more so now I no longer have a spleen.
If I get a temperature of 38+, I must get to Emergency asap.
It was drummed into me, that I am, apparently, 'very sick'...
... my lymphoma is making me ill, tired etc / not the operation after-effects
"Have you got any fucking good news?", I did enquire

Breath ...

Had I come in showing 'just' this type of B cell NHL, then my 'prognosis' would be very, very good. Around 90% +
However, as I have this rare morph and type, then sadly, we are looking add slashing those odds down to about 60%.
Either the Lymphoma will not react to the R-Chop treatment (unlikely, as it did respond partially to the AVBD) ...
... or 'relapse' starts to occur. The consultant was reluctant to talk about that.
"So that'll be a 'No', then", I concluded.

And exhale ... you did well to stick it this far.

You're up to date ... I don't have anything to add. What is there to say?

Onwards, onwards .... Once more into the breach, dear friends, once more ...

that feels a bit sore

2010-06-07T18:45:00.001+01:00

First of all, for those that were expecting some of the long 'memories from a hospital' type blogs I promised, I've decided against them for mixed reasons. What is going on now seems more important than back then - and I'm about to post up some Big News.

However, I will very briefly tell you this one story, as I know you all like a soap-opera.

Right before my actual operation, in the pre-op room, I was given an epidural (spinal). I was told if I didn't there would be a tremendous amount of pain afterwards. Ironically, as I came to in the post-op room, I would describe the pain I was in as significantly more than 'tremendous', regardless of this magic spinal fluid.

I went into some sort of shock/shaking fit, shouting for pain-relief. A very long 30 mins later I was injected with something that helped me stop shaking and retching (on fresh internal stitches, oh yes) . This respite was taken as an opportunity to move me to my hospital cell/bed. But the pain soon came flooding back. I called repeatability for help. Some 2 hours later, the nurse who fitted my epidural came to look at where it was placed. It wasn't news to me that it wasn't in place.

Apologies were made and I was told my next best option was a self-administering morphine machine.

Sure.

Just. Hurry. The. Fuck. Up.

Two hours later said machine arrived.

So there you go. For the first 4 hours after having *that* spleen removed there was no pain relief. Pause for a minute and let your own head work out how much that might 'smart a bit'.

The next time one of you females say to me, in your holier-than-thou voice, 'you men don't understand real pain - you never have to go through childbirth', I might be inclined to offer you a Pepsi Challenge on it.

"Here love, let me take out this 8.2kg organ from you - a couple of paracetamol should see you right ..."

I hear-by award myself a 'very brave boy' badge. Pass the sewing kit.

obspleen photography

2010-05-29T10:10:00.007+01:00

I'm doing a lot better. Feeling better, eating better and getting some strength back. It's still going to be a little while before "i'm back", but I'm on the road.

OK ... let's talk about this spleen the hospital removed then. I am still not in the mood for writing very much, so this blog will be perfect, as a picture paints a thousand words.

Linked at the bottom of this spleen are two images.

WARNING, WARNING ... FLAILING ARMS ...

These images are graphic. They are of a very large, cancerous internal organ remove from the body. Do not click the links if you are squeamish or upset by such images.

Right, before we begin, some points ...

1. The hospital took a series of photos of my spleen on removal. I had to sign permission for the them to be used in medical references etc. According to the consultant who got me to sign, this is very rare nowadays, as most things have been tagged already. The snapshots below where taken on my Blackberry from the originals - photos of photos, as it were. I am allowed to request originals.

2. The weight of the spleen is, apparently, 8.4 KG. (1.3 stone!) This is ridiculous - the weight of carrying twins! - and I refused to believe it at first - but three people in the hospital have confirmed this. The matter it is made up from (dead cells, dead blood etc), is very dense. It also explains why I went from just over 12 stone (despite have no muscle) to under 11 stone.

3. OK, finally ... "A normal Spleen is about 12 cm long, 7 cm wide, and 250 cm3. It is shaped like a largish fist" ... so, clench your fist, take a look and then take a these two pictures.

image 1
image 2

hating the alien

2010-05-24T18:37:00.000+01:00

I guess I better give you something - the hits to my site keep coming and no updates from me is just not good enough. You deserve something.

Here is something. Predictably, it's another misery blog.

My first few days at home have been difficult. I had a few hours to myself, which resulting in some sobbing and then my father came up to be my cook, cleaner, waiter, taxi and friend. He did a sterling job, to be fair and we got on very well. More importantly, he kept me from drowning in self-pity, over these first few days of home-healing.

Perhaps surprisingly, my main pain 'complaint' has been coming from the stomach and gut. Huge trapped wind, bloated stomach, nausea (including vomiting, of course) and general 'bottom problems', resulting in dreams filled with the awareness of the pain.

I look in the mirror. I look like an alien. My arms are thin, having lost their muscle and shape over the last months. My stomach is extended, with a scar that runs from the centre of my chest to the groin area, taking a detour around my belly-button. I am white. Think closing scenes of Close Encounters.

Christ, I want to run. The mini heat-wave in the UK has reminded my that only last summer I was managing to get up and run 10 miles. Now, I cannot walk more than 400 yards without needing a sit down. It is utterly soul-destroying. I look out my window and see joggers on the canal - each one reminding me of how I've lost all my strength and fitness. God, how I want to start training again - but then comes the ultimate crushing thought ...

The thought is this: I'm recovering from this operation to get well enough to start chemotherapy again.

Getting better to be knocked down again.

Give me a break, Lord.

However, let's put a positive on this. Each day I am getting better. The stomach is settling down. I am eating better. My mind is waking up and I'm beginning to think about work, about music, about interests, about futures, about health ... I see this stage of recovery as days rather than months.

As my father wisely says, 'pain does not have a memory' and one day soon, I will wake up without it and have a normal day and this stage, like all my other stages on this ridiculous journey will just be a bad memory that I won't return to very often.

I've so many stories to tell you from hospital ... they can wait for now. The spleen was horrific. So horrifically large and rotten that the hospital took photos for medical research, which I had to sign off. They don't do that often. But that is for another blog - let me get back to some health, some writing ability, some wit and I'll try to piece together the low-lights for you. Some were very low.

So, there you are and here I am. Killing time, watching the healing and hating the alien.

Speak soon ...

Home

2010-05-21T12:42:00.000+01:00

I am home. Sitting in the silence after the chaos, tearful and exhausted.

I've been to hell and back at least twice but have survived and am now lying on my sofa listening to the silence and the birdsong.

There's lots to tell and some horrific images to show but I need time to rest, piece it together and turn it into something comprehensible.

Thank you all for the messages. Sorry I couldn't reply to them all.

Big hug ...

Sent from my BlackBerry® wireless device

Alive

2010-05-11T19:40:00.001+01:00

But have had the worse day of my life. In a world of pain. But alive.

Sent from my BlackBerry® wireless device

The Kemo Kid

The End

clocking in

"thank you for calling us today. your call is very important to us. please hold."

the hardest part of this, is leaving you

PET/CT scan

R-ESHAP Session 2 delay ..

Kemo-Kouch

the Prophet forsees good times

mankles, shut-ins, sleeping with towels and john merrick's neck muscles

Simon-Non-See

pain management

time off for good behaviour

alcoholics anonymous 'chair' - 26.10.10

options and stats

changing rooms

less is more

insane with sidepain

my fifteen minutes are being used up

swing low

home again

no, you shall not have too much good news ...

but there is always hope

your crosses fail

keep them crossed

Breakfast

bleurgh and meh

air head

im here all week, folks

day 4 complete

day 3 complete

fat bastard

day 2 complete

day 1 complete

sugar, we're going down swinging

vroom room

the last supper

no way out

please sir, can I have some more ...

time passes

dinner time

deal or no deal

plan B: run away

flushed

dead line

back to my bedlam

jump leads

we apologise for the delays on the central line ...

why am I here?

so, what's next ... ?

let's not start sucking each others cocks just yet ...

*newsflash*

three days and three goals later ...

fyi

iThanks

you might want to sit down for this one ...

Results tomorrow ...

whilst you are waiting ... some music

... 4 days off

4 days on ...

just a little nap

ever the optimist

bedroom artists in desperate need of fans - apply within

the boy with a thorn in his side

With friends like these ...

Oh, *that* much

fed up (again)

silence is golden

"Don't get cocky, kid"

R-Chop 3

"There Is Always Hope" - video

"There Is Always Hope"

cancer stats

RIP John Worsfold

get knotted

79p well spent: "Traps" on iTunes / Amazon

as a coot

more traps

some sad news

R-Chop 2

newsflash

Oh, that much