Wednesday, 24 November 2010

clocking in

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 ...


Sent from my BlackBerry® 9700 wireless device

Saturday, 20 November 2010

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

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


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.


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

Friday, 12 November 2010

the hardest part of this, is leaving you

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.

Tuesday, 9 November 2010

PET/CT scan

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

Friday, 5 November 2010

R-ESHAP Session 2 delay ..

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.

Thursday, 4 November 2010


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.


Sent from my BlackBerry® 9700 wireless device

Wednesday, 3 November 2010

the Prophet forsees good times

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

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.


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.