Simon-Non-See

Oh dear.

The best laid plans of rats and boys.

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

But, neigh.

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

I felt bad.

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

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

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

Saying that, call first.

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

I think we know what this means.

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

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

It even takes my little seaside break.

Cancer is rubbish. FACT.

pain management

Happy Weekend.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

zzzzz

time off for good behaviour

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

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

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

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

Yip yip




Sent from my BlackBerry® 9700 wireless device

alcoholics anonymous 'chair' - 26.10.10

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

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

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

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

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

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

Enjoy ...

AA Chair 26.10.10 by Delete All Contacts

options and stats

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

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

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

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

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

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

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

Some interesting stats

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

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

However ...

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

'How many people are on the database?'

'About 14 million'

'OK...run it through'

'OK, I'm showing 81 possible matches'

'Blimey'

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

'81 is more than zero, there is that'

-------

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

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

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

Until then ...

changing rooms

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

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

insane with sidepain

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

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

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

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 ...

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

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

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

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

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

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

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

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

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

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

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

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

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 ...


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sugar, we're going down swinging

And so it starts ...


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vroom room

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

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


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no way out

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 ...

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.

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time passes

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

Mmmmm.

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deal or no deal

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

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

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

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

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 ...