shallowgravy

catchup

2006-03-19T23:30:00.000Z

amazing how quickly you get used to not working. then again, over the last five years i've been on and off work so often i've lost count of how many months i've been away from the office. but this week wasn't all feet up watching countdown on the telly, oh no. on wednesday, i went to see a dietician/health educator called jill swyers, who is into raw foods and the hippocrates diet. it's a great regime, lots of really healthy food and cutting out a whole load of shit from your system. i was all ready to pack my bags and get going (except that the insurance company wanted to charge me £1500 to cover cancer risk), but in the afternoon i went to a naturapathic centre in winchester, where i spoke to a dietician, an osteopath, and a breathwork specialist. wow, i was blown away. lisa, the naturopath, spent ages taking my diet to pieces and working out a new one which would put my body under less stress - and also convinced me that if i went on the hippocrates diet immediately my body would probably explode, kind of like if you try to chip down through the gears from fifth to first in one go. a stressed body like mine needs to be brought down to earth gently, instead of a full-on detox which might do more harm than good. dr. amos the osteopath was amazing, he spent ten minutes fiddling with my spine - no more than just prodding it a bit here, and then after a minute shifting one finger and prodding it a bit there - and since then i've not had my neck pain nearly as bad. so all in all i came away from there with a big cheesy grin on my face and a determination to sort my diet out big style.
other stuff - hmm, maybe the reason my neck hasn't been hurting so much is that i've taken to sleeping upright on the couch at the moment. it was a bit weird at first but i'm used to it now, though my cheap crappy couch looks like it's going to implode. sleeping upright means less pain, and i also cough up a lot less blood - lying flat seems to bring that on quite bad, for whatever reason. sorry to share, but there you go.
also had lots of friends round this week - jackie came to visit on friday and lyndsay yesterday, as well as graham and jenny today. everyone is unanimous in their belief that i should move back to glasgow and i've been looking into moving back to hyndland - you can get great wee flats there for around £600 a month, which would be doable if i could rent out a room in this place. hmm, ponder ponder... anyway, wasn't much fun with everyone unfortunately, i'm in a bit of pain at the moment so whenever anyone came round they had to watch me sitting on the couch holding my side and grimacing every few minutes... i wasn't exactly scintillating company. ach well, i'm phoning the doc tomorrow to see what she thinks. also this week, an mri scan and a trip to brighton to see jill my hypnotherapist. so you see, quitting the job has not led to the quiet life that i expected, more's the pity. it seems that all this leisure time is going to be hard work...

more of the same

2006-03-12T18:46:00.000Z

nowt been happening in the last week reely. have been into work and signed off - the company doctor agrees that i shouldn't be working, so that's good news. just waiting for the insurance company to talk to my oncologist to dot the i's and cross the t's. one cloud on the horizon is that the insurance folk insist on a six month wait between the initial claim and them starting to pay out my salary - so what happens in that six months? one solution might be if sky can persuade the insurance company that the six months i took off last summer count towards the six month period. otherwise, it's up to sky - they can carry on paying me for six months, or they could put me on statutory sick pay instead. it's all up in the air and i'll admit it's a stress - i could potentially be having to live for six months on £60 a week. not good. but sky have always looked after me so let's just keep our fingers crossed...

back in the stink

2006-03-07T16:53:00.000Z

holiday part 3: so back in london. had a great time getting from kincraig to inverness yesterday morning - the windscreen washers had frozen solid overnight, so the windscreen kept smearing up with all the salt kicked up from the road. every couple of miles i had to stop the car and chuck snow onto the windscreen to wash the crap off. so by the time we were even halfway to inverness, mum was going to be late for her flight. god knows how many speeding tickets i've picked up for hooring up the A9 to get her to the airport - and to cap it all off her flight was delayed. gah!
so now i'm back. i swear london is sucking the energy out of me, i felt great when i was up north, but yesterday it was as though i'd never left - i had the shivers, i felt like shit, and i woke up twice with the sweats. i really am thinking about the move back up north now, and when i told mum she lit up like a christmas tree. so it might happen sooner rather than later...

the best laid plans of mice

2006-03-05T15:46:00.000Z

holiday part two: tings never go to plan do they? made it to gatwick at half eight on friday morning to be told that inverness airport was shut, snowed in, and they'd cancelled my flight. the next flight was fully booked, so i was looking to be stuck at gatwick till ten to eight in the evening, and arriving at inverness at ten at bleedin night. luckily i had a brainwave - i transferred to the 1030 flight to glasgow, and got there about noon, met up with my brother, and drove up to inverness that way, just in time to grab my mum when her flight finally landed at the (now open) airport. so it all ended up okay, and to top it off, i got an upgrade on my hire car - i've been driving a mondeo for the weekend, it's got more buttons and flashing lights than anything i've ever driven before. it's got cruise control! cruise control i tells ya!!!
since then it's been a fantastic weekend, went into inverness and aviemore yesterday for a donder round the shops, and today went to a wee place called the countryfair in brody, which did simply marvellous cheese scones darling. the rest of the time we've been chilled out in the hotel, watching the snow fall, playing pass the pigs, and eating ourselves sick. venison fillets? don't mind if i do. deep-fried brie? och, a lifetime on the hips but never mind! tonight is duck in cherry sauce, with a bottle of chateauneuf du pape as a last night treat. i so don't want to go back to stinky london tomorrow, i'm really determined to spend at lesat a few months living in scotland soon, i've been so unstressed since i got here, i've been feeling stronger than i have done in weeks, and my lungs aren't playing up nearly as much as usual. it's been a real boost.
i've worked out - the winter rate for the ossian is about £21 a night if you have dinner there - that works out at £630 a month, and say another £450 for dinner each month - let's call it a round £1100. well, if i add up my mortgage, travelcard, council tax, leccy, water, grocery and phone bills, it comes to pretty much the same amount. so it's decided - i'm going to sell the flat, move up to kincraig and live in the hotel, like the major in fawlty towers.

offski

2006-03-02T20:55:00.000Z

holiday! i'm off to aviemore to see my mum and my bro tomorrow. the flight is first thing in the morning, so i've done the sensible thing and hired a room in a hotel near the airport. the rooms have got wireless, so that's how i can write this, via my laptop. such technology! i've already done all the things you do at hotels - i've eaten all the free biscuits, i've had a bath boiling hot and filled right to the brim, and i'm polishing off the obligatory £5 glass of wine. the only pubic hair in this otherwise delectable cheesecake is the state of the slop they had the nerve to serve me at dinner. vegetable korma my skinny arse, the vegetables came straight from a tesco value tin of assorted end-cuts, and the sauce did ming. grrr.
so tomorrow, off to inverness, there to meet mi madre and hire the car that will take us to kincraig, a tiny village about 7 miles south of aviemore. we know a great wee hotel there, and it looks like we'll be staying there for most of the weekend. myself and bro were planning to go hill-walking but apparently the weather has knocked that on the head - blizzards, snow, -10 degrees tonight apparently. so instead a nice weekend of backgammon and maybe a wee shopping trip to inverness for mum - bright lights big city for her, her wee hebridean eyes always light up when we go to marks and sparks.
as for everything else - still haven't spoken to the big boss at work, he's been off sick as far as i can gather. i've not been into work since monday, and have been trying to get in touch with him but with no luck. ach well, i'm sure someone will miss me sooner or later and get in touch. until then, let's party in the highlands, och aye the noooooooooo!!!!

in which andy's future is decided upon

2006-02-26T18:51:00.000Z

it's been a week since i got sick, and i'm still not 100%. actually forced myself to get dressed and go for a walk today just 'cos i've not really been out of the house at all in the last week. made it once round the block then straight back in under the duvet. crazy. well, doesn't matter how ill i feel tomorrow morning, i'm going to make into work come hell or high water, to deliver my news. what news, andy? well...
went to get the results of my biopsy, not last thursday but the thursday before. it turns out the lump on my rib is cancerous. well, no surprises there, but the problem is that they can't remove it without removing the surrounding lung. to cut a long story short, if they cut every bit of cancer out of me, i won't have enough lung left to breathe. this means that finally, it's been decided that my cancer is inoperable.
what does this mean? for a start it means that there is now no hope that i can be cured by orthodox means. there are still alternative and complementary treatments out there, but i have to be realistic and think that they will only help keep things in check. even major players in the alternative treatment world (people such as julian kenyon) admit that sarcoma are tricky wee buggers. but alternative treatments - and trial drugs (more of which later) - could keep me going for longer, which is the name of the game from now on.
so - questions. how long have i got? what am i going to do with myself? what about work? ah yes, work, forgotten about that. i'm going into work tomorrow to let them know what the score is. i intend to go on permanent sick leave, which will probably mean i get put on half salary. there are other options of course, which i'm going to have to discuss with the boss and the h.r. department. i do know that my working life is pretty much over for the time being. this is a crushing disappointment, considering how hard i've worked to get to where i am just now, but at least i got there. i made it as a java coder, and no-one can take that away from me. it's the one thing in my life i'm really really proud of, so that goes some way to take the edge off the fact i won't be working for much longer.
what am i going to do with myself? have some fun! i'm going to do a bit of travelling, and maybe move back to glasgow. as luck would have it, there's a trial drug clinic in glasgow which is twinned with the one at the marsden, so i could live up there and still go through the same trials as the ones i'd get in london. this is very important - apart from my friends, and the good comlementary resources down here, the marsden is pretty much the only reason i'm tied to london. so i could rent a flat in glasgow, enjoy a more chilled out life up north, be closer to my family, and *still* get treatment. it sounds like a good idea - watch this space ;-)
and as for how long i've got left - who knows? michelle - my doctor - doesn't think i'll be in any real trouble this year, but can't be more specific than that. there is apparently someone on the trial drug treatments who's lasted four years, and she's got a sarcoma - so i could be around for a while yet. fucking hope so, i've gota few places left to visit yet!

why the big paws

2006-02-23T20:30:00.000Z

been flat on my back since sunday with a stomach upset/food poisoning/something or other. i've been weak as a kitten, luckily bruce has been here this week so he's been able to get the dinner in and keep the place from turning into a cesspit. what a star... anyhoo, will write properly when i'm better, i'm over the worst now but still nowhere near 100%. lots to write about as well...

choices, choices

2006-02-15T17:36:00.000Z

got my monthly sarcoma clinic tomorrow - can't wait. while it's always good to catch up with dr. michelle and go over what's been going on the last month (not much this month, although for the last four days i've only coughed up the tiniest bit of blood, which is great), tomorrow i'm not looking forward to so much. i should (probably, not guaranteed though) be getting the results of the rib biopsy i had last month. i somehow get the feeling it's not going to be good news - this is partly intuition, partly the fact the radiographer said in her opinion it was probably another sarcoma. should be interesting to see what they suggest - will they recommend that i lose another rib? before or after the lung op? of course there might not *be* a rib op. anyways, not looking forward to another rib resection - the first one still ranks as the most physically painful operation i've ever had. not surprising really, i can't imagine that snapping a rib off and cutting it out of your body is the most delicate operation ever performed. it took weeks to get over the last one, every sneeze, every speed bump was a nightmare. still, better than the alternative, and the scar should look cool

you may feel a bit of a prick

2006-02-14T19:29:00.000Z

so, the biopsy itself was a bit messy but nowhere near as bad as it could have been. it was done by ultrasound, so the doctor scanned my rib then chose where to do the biopsy from looking at the ultrasound monitor. luckily for me, the surgeons have removed a lot of the nerves from my right side during their various adventures round my midriff, so i didn't feel the initial anaesthetic injection, let alone the biopsy itself. i could feel it though, even if it didn't hurt - the sensation of a needle *crunch* through and into the middle of your rib, three times. lovely. each time a bit of lump suctioned out and put onto a slide - i asked to see one of them afterwards, and it was only a disappointingly ungory smear of reddish gak across a wee slide. but that smear will tell them whether or not another of my ribs has gone cancerous - which would be a bit of a blow on top of what's going on in my lungs. ach well, wait and see i guess, not much i can do about it...
rest of the time on the ward was peachy, i had the four-bed bay to myself most of the time, and was out after only one night. there was an older guy in the bed next to me, had quite a few melanomas on him, was in for some palliative surgery. he was putting a brave face on things but i think he was quite scared underneath it all. i got to wondering if that's how i come across... the guy in the bed opposite me was in getting a large chunk of his leg taken off, he had a sarcoma, different type to me but still potentially very nasty. he'd read up on the internet, wasn't much he didn't know, was full of cheery statistics about metastatic disease and stage 1 vs stage 3 tumours. he wasn't much older than me, early forties maybe, i think he was shocked when he saw me hacking up blood into the sink - there but for the grace of god go i, thought he. well, fingers crossed for the guy, he had a nice family, i hope they get it all out of him.

numb

2006-02-11T10:17:00.000Z

so when i'm injecting myself, the doctors gave me this emla cream stuff which helps numb the skin before you put the needle in. i've stopped using it now, but usually i would just slap a bit on and wait half an hour or so - it probably does me more psychological good than anything else. anyway, the other day i put some on my leg before my injection and put the tube in the back pocket of my jeans. this was at about 3 in the afternoon - i went on a works night out that night, and was sitting at the table with everyone when i realised all was not well. basically, the tube had burst in my back pocket, and the emla cream had leaked through the denim, through my boxers, and onto my arse, the righthand side of which was now completely numb! should have gone up to old compton street and taken advantage of my lack of sensitivity to make some money...

who put the sun in my sunday morning

2006-02-05T18:07:00.000Z

feeling much better today, bounced out of bed at the crack of 9 ready to face the day. the flat is a total shithole at the moment, as it always is when i've been off-form and bruce isn't here to get the french maid's outfit on and give the place a sweep with the feather duster. so, the old newspapers got chucked, the kitchen was disinfected, my desk decluttered. have spent the day alternately watching liverpool get humped by chelsea and coding some javascript for lynds. i'm a bit of a housecat at the moment so it's felt great just padding about the house and cranking out some code for fun, just like the good old days. now going to stick my feet up, watch some telly, drink some wine, have a bath, and go to bed. *and* i don't have to get up at half six tomorrow, so i'm a happy cat at the moment :-)

hoping every slip's not a slide

2006-02-04T19:09:00.000Z

it's been a while since i last wrote, not surprising to be honest. i've not been on top of my game these last few days. last tuesday night i got a really sharp pain in my lungs, worst i've had since my embolism. i thought it *was* another embolism, and if it hadn't been for the fact i was staying in brighton at the time, i would probably have called an ambulance. anyway, come the next day i was still alive, so i necked some painkillers and went to see jill the hypnotherapist. while i was there i coughed up the largest amount of blood i've seen since i first got ill, so i was straight on the phone to the marsden and was there an hour later.
well, the doctors, didn't seem to think it was anything serious, they took an x-ray and ruled out another embolism. they couldn't give me a diagnosis, in fact the doctor said that wasn't the angle he was coming from, he was more interested in ruling out the life-threatening than in pin-pointing the actual cause. so since then it's been a case of ignoring the horrible bubbling sensation in my lungs and taking the pills for the pain. sorry to share that with you, but fuck it, i'm living it so you're reading it. since then i've carried on coughing up more blood, but i think it's starting to calm down, certainly it's not as sore as it was. it still plays up when i lie on my back though - and as that's the only position i can sleep in these days, it's a bit of a hassle.

trainspotting

2006-02-04T19:00:00.000Z

talking of taking the pills, that's a laugh as well at the moment. i've been quite dependent on the codeine and morphine these last couple of weeks for pain relief, and as you know, they are both habit-forming opiates. so on thursday night i made the decision to come off the lot. from now on, nothing more powerful that paracetamol and ibuprofen. you see, although they are very effective painkillers, they do pack a buzz, and you do notice it. codeine gives you a very mild buzz which you can work through no problems, makes you very chatty and upbeat, i was starting to take it a lot - three four times a day. the morphine is obviously to be respected more, but i was still taking that most nights when i woke up in pain. and both drugs, on various websites, make it clear you should treat them über-carefully if you're an alkie or junkie - while i've been neither, i'm sure i speak for most of us when i say i have the kind of personality that enjoys a quick kick up the neurotransmitters every now and again. so - off the pills for andy.

well, yesterday wasn't too bad, but today's been not good. i've had the sweats, i've felt sick, i've had hot and cold flushes. it's hard to believe, the websites and leaflets both said i'd suffer withdrawal symptoms coming off them after such a long time, but i didn't really think i'd suffer - it's not smack for heaven's sake. but nope - looks like cold turkey on codeine and morphine is real, though it's obviously not as bad as the smack - there are no babies crawling across my ceiling as yet.

downtime

2006-02-04T18:34:00.000Z

found out while i was in the marsden getting my lungs x-rayed that i am due in next tuesday for a biopsy on my rib, to find out whether or not it's cancerous. this would usually be an out-patient deal, but of course it's not that simple for me, oh no. because of my embolism and subsequent drug-induced thinned blood, they need to make sure that i don't carry on bleeding after they take a sample from my rib. sooo, i'm currently off the warfarin and back on the tinzaparin - which means i don't take pills any more, i inject instead - both drugs stop emboli, but tinzaparin does so in a different way from warfarin apparently. anyway the upshot is, i can get drunk this one weekend only, woo! only problem is i don't want too, i really can't be arsed. don't know if that should worry me or not ;-) i'll go into hospital on tuesday and stay there till thursday, worse fucking luck. more time in hospital, i hate it. and i'll be cannulated and attached to a pump while they feed me drugs while i'm there, which i hate most of all - totally confined to the ward, can't leave, it's a fucking nightmare. and i HATE cannulas. ach well, it's only 3 days i guess. but i'd kind of forgotten about the lump on my rib, and now i'm thinking about it again. it's hard to say whether or not it's bigger than when i first noticed it, but it doesn't feel good at all, and my surgeon was pretty apprehensive when he felt it. ach well, i've lost two ribs, i suppose one more won't make any difference.

here comes the science bit

2006-01-29T20:35:00.000Z

got a letter through the post from michelle, my oncologist. it's a copy of the report of my last ct scan, and i thought i'd put it up here so you can be as baffled as i was when i read it. the text in square brackets is stuff that michelle has added on to explain things:

"By comparison with the last CT of 07.12.2005 the nodular opacities in the lung periphery (some of which appear to be filled and dilated airways) are essentially unchanged. However, on a single section (Image 33) there appears to be less in the way of conglomeration of the nodular opacities in the anterior [front] segment of the right upper lobe. Conversely there are more patchy areas of peripheral consolidation, notably in the left lower lobe - again whether these represent pulmonary infarcts [where tissue has died due to lack of blood supply (as when pulmonary emboli get stuck in the lungs)] is unclear - they would be a very unusual manifestation of metastatic disease [from your chondrosarcoma]"

mental, eh... what it basically means, as far as i can tell, is this: the stuff that was already there hasn't got any bigger, indeed in one place it seems to have got a bit better. there is new damage in the lower left lung, but this could be due to the embolism - it doesn't look like classic tumour behaviour.

starvin marvin

2006-01-29T11:14:00.000Z

was supposed to go to the gym yesterday, but slept through my alarm and didn't wake up till half nine - ten and a half hours of solid sleep, mental! now, i've been watching chariots of fire, and my inner calvanist has been telling me i shouldn't be running on the sabbath. luckily, though, my inner atheist was listening to all the fire and brimstone, and lobbed a holy hand grenade in the direction of the pulpit - so i was guilt-free as i packed up my kit and bounced off to the gym at the ridiculous time of half eight this morning.
it was another of those classic good news bad news scenarios at the gym. i knew it'd be a tough session - i've not been since before i had my embolism so i'm not fit. but i could only barely manage eight minutes on the running machine - though to be fair it was fast and uphill. bad news. so after five minutes of trying not to throw up, i went on the stairmaster. these are the two machines i need to focus on, 'cos i'm going hill-walking with my bro next month and need to be fit for it. so anyway, the stairmaster wasn't so bad - got through a hard few minutes on that without my heart bursting through my ribcage and demanding to know what the *fuck* was going on. good news. i called the session an honourable draw and ran away to the sauna. on the way out the door, they were giving away free copies of the observer. good news. i was walking away from the gym with a spring in my step - guess who's just saved one pound sixty pence? me, that's who! when the cosmic karmic wheel ground inexorably round and i coughed up the biggest lungsnot i've had since the first one. fuck knows whether the exercise had shaken it loose or whether it was caused by all my bouncing up and down, but it took the wind out of the sails of SS Free NewsPaper. baaaad news. ach well, better out than in i suppose. wish there'd been some folk around who i could have freaked out by hoiking blood all over the pavement.
oh yeah, the other bad news was i weighed myself at the gym. ten stone. ten fucking stone. the last time i weighed that little, i was living in hillhead street, i had dyed black hair and the cure were the only band i listened to. you're supposed to be skinny when you're a goth, but now it seems a little on the thin side - i've lost a stone in the last three months. now the question i'm asking myself is the obvious one - is it the cancer that's making me lose weight? or is it the fact that i don't drink any more, i've stopped eating sugar, and i've cut dairy from my diet? need to speak to the doc and find out, but i'm fucked if i want to lose any more, i've got enough problems without looking like a fucking aids case. then again, at least i've lost my wee pot belly!

freshly squeezed

2006-01-27T16:09:00.000Z

tracy has got me in touch with a guy who sells wheatgrass. wheatgrass, in case you can’t be arsed clicking on the link, is this amazing stuff full of life-giving minerals, vitamins, enzymes etc. we can’t eat it as it is, because we’re not cows, and so we don’t have the five stomachs you need to digest it. what you do is put it through a juicer, and then drink the result – the famous wheatgrass juice that was all the range in hip manhattan joints not so long ago. now, the reason I’m drinking this stuff is everyone really does rave about its healing properties, but there are a number of drawbacks, as there always are. for a start, the stuff doth ming. it is perhaps the least tasty liquid I’ve had in my mouth since the last time I took shore leave in san francisco. the other big problem is it stains everything it touches, and it gets everywhere – just like a toddler I guess, though a toddler is probably cheaper to run. another problem is that my kitchen is full of stay bits of grass that escape from the juicer. other flats in london have problems with mice and rats, I’ve got a sheep infestation.

and another thing

2006-01-20T19:53:00.000Z

listening to radio 4 tonight, yet another play about some middle-class professional going through the cancer wringer. this time it's a female priest waxing eloquent, moaning in tortured tones about how she doesn't want to die. last week there was a short story about a bitter old journo who was diagnosed with lung cancer. i've listened to a few plays on the radio, and on the telly, about cancer. they all have one thing in common, and that's fuck all to do with *any* experience that i've had with cancer. lots of portrayal of the doctors as faceless robots who deliver the news in a monotone then send you off down the conveyor belt. lots of pleading to unanswering dieties to tell them why? why me? why now? and lots of sitting in the middle of the road, staring at the headlights, unable to move. well fuck that. fuck them all and the horses they rode in on. i've never heard or seen any portrayal of a cancer patient as anything other than a victim, a helpless puppet swept up in a tide of events. well aye, sure, it can feel like that, but where's the plays showing the patient taking control? finding positives? finding the strength to carry on? maybe it doesn't make for good drama, but it's a fuck sight better than the salacious shite that salivates over the titillating story of someone else - not you - staring a painful death in the face. it's got fuck all to do with being sympathetic, everything to do with voyeurism, and it makes me puke.

happy birthday to me

2006-01-18T19:24:00.000Z

happy birthday to me
happy biiiirthday dear meee-eeeee
happy birthday to me

hooray!

had a quiet day, had a lovely lunch with the old workmates, and a great present from roj n lynds - a beautiful photo of the west coast of lewis, all purples and greens, angry skies and a brooding sea. every time i look at it, it changes. also found out from the boss that i'm getting my own laptop to work from home. not a bad day :-)

ka-boom? yes, rico. ka-boom.

2006-01-14T13:09:00.000Z

so i've been putting my great christmas present (the splendid champion juicer) to good use. every day i grind up a shitload of fruit and veg and chug the lot. well, after a while you get bored of the same old same old, so when i was in the supermarket i went to the juices section for some inspiration. and there it was - a bottle marked 'apple and ginger'. ooh - très exotic, n'est pas? so i grab a handful of ginger and a bag full of apples and home i go. i've never juiced ginger before. i cut up a piece, a big cube about an inch long, and chuck it through the juicer. juicer growls, and spits out a tiny wee bit of juice. hmm, that's not a lot, best chuck some more in. so in goes another big lump. still not getting much juice but i've used it all up now. oh well, never mind. in go the apples and i've got a pint of apple juice with a wee bit of ginger in it. cheers, i says to myself, and takes a hearty swig.
five minutes later, i wake up on the kitchen floor. what's happened? someone's set fire to my head. is that blood? oh god, my mouth, i can't feel my mouth! my tongue has dissolved! help! snot is dribbling all over my face, tears stream from my eyes. i'd call an ambulance but without a tongue how can i tell them where i live?
so anyway, the moral of this story is simple. never get ideas above your station, or your head explodes. seriously.

in which andy spends yet more time in a waiting room

2006-01-12T22:25:00.000Z

spent an hour waiting to be seen at the joint sarcoma clinic - my fourth hospital trip in four days. i've got another clinic tomorrow, which means i'll have been at hospital five times in five days. surely i get some sort of frequent-flyer discount? maybe a free operation or something? jump to the front of one waiting list of my choice? ach well.
so anyway, doctor michelle, my consultant oncologist, is great. she's a straight-talking aussie who doesn't mince her words (the second time i saw her, she gave me a very frank account of what she thought my chances were, which i won't repeat here because i don't want to scare you). the first thing she did was tear right into me for not going straight to hospital when i had my embolism. she basically told me i was damn lucky still to be alive, and if i'd been less young and fit i could well have popped my clogs before i was treated. i'm not being melodramatic or trying to big myself up here, she seriously spent five minutes explaining to me in very simple and direct terms how close i came to dying. there's nothing like that to make you savour every single breath that you take. mmm breathing. breath in... breath out... i'm still alive.
so anyway, it was a very positive clinic. the fact i'm (still) coughing up blood every day didn't seem to worry her too much, which was a boost even if it still worries me. she told me it was still possible to operate on me even though i'd had a blood clot - they can switch me to different drugs before the op, all very complicated but it's do-able. the only worry is the fact i've got a new lump on another one of my ribs - she's going to organise a bone scan to see what the score is with it. i've got my suspicions, but i'm not going to say anything just now - let's wait and see what the scan says.

to be continued...

2006-01-11T15:57:00.000Z

had an appointment first thing with mr. ladas, the thoracic surgeon. i'll keep it brief - there's a lot of new damage to my lower left lung, but this could be down to my embolisms/blood clots as opposed to the tumours. as it is, he can't operate, but i'm to have another scan in three months to see if the warfarin has cleared up that area. he said at the moment the chances of him ever being able to operate are less than 50/50, and the fact i've had an embolism complicates matters - if i have an operation, i'll need to come off the warfarin, so what then would stop me having a fatal embolism the day after the operation? v tricky. i guess this also means i won't be able to have my hernia operated on, but i'll know that for sure on monday. anyway, there was some very good news - the other tumours in my right lung and upper left lung don't seem to have progressed at all, and the report on the scans seemed to say there was a slight improvement in the cluster of lesions in my right lung. so that's fantastic news - if i can keep the tumours under control like this, if they're not getting worse, then obviously i'll survive longer. so, i was really happy when i came out of the clinic, which is unusual for me, usually i come out v depressed indeed. tomorrow is the oncology clinic, where i speak to a consultant oncologist as opposed to a surgeon, so i'll see what she has to say. fingers crossed but i'm feeling positive just now...

not drowning but waving

2006-01-10T22:33:00.000Z

had a bit of a revelation tonight. i hadn't realised how much i've been affected by the embolism, and the fact i've been coughing up blood every day since it happened. so it was a boost when gill phoned tonight. at one point she asked when i was going to sell the flat and move back to scotland, and i nearly just said that i probably was never going to make it back to scotland, that i wasn't going to last long enough to do any of that. then it hit me, i was really starting to believe that, that i wasn't going to make it back up north, that i wasn't going to get better. every time i tried to think of the future, i was coming up against a huge resistance. but now i've recognised that, it's like a balloon going pop or something. no, more like - you know when you used to do a colossal bong, and you would just sit there, listening to black dog and staring out the window? and then half an hour later you'd snap awake, snap, and there you'd be, back in the room and ready to do the dishes. well that's how i feel. i've spent the last few weeks in a stoner hell of depression and death fantasies, and now i've snapped awake, and i'm ready to start thinking about my future again. it's a million times harder to think positive to survive than it is to do the dishes, but you know i'll do *anything* to avoid doing the washing up.

another day, another scan

2006-01-09T22:02:00.000Z

two hospital appointments today. first to the homerton, there to make my home amongst the flotsam and jetsam of hackney - there was one lass, she was genuinely off her rocker, she looked and sounded just like terry jones in that monty python spam sketch. she was screeching and cackling and sounding off all over the place. it was great, you couldn't buy that sort of entertainment at 9 o'clock on a monday morning. so, after they bled me and made sure my blood was still as watery as a cup of my late nan's tea (sorry nana, but you did always have the best biskwits ever if that's a consolation), i went home and *shudder* tidied the flat for a bit. where's all these cheap polish housecleaners - the ones i've been reading so much about in the daily mail - when you need one?
anyway, in the afternoon i braved the tube strike to go to the brompton for my latest ct scan. fairly painless, needle went in first time woo! it's weird, when they take the scan they pump you full of dye to show your insides up better, and you can feel it go through your whole body - you can taste it, it makes your hair tingle and you get the maddest sensation that you've just pissed yourself. anyway, the dye tastes different at the brompton than it did at barts and the london independent - not sure i like it as much. definitely lost a michelin star on that one boys, must try harder. so, now i wait till wednesday to speak to the big man - one of the big men anyway. they offered me a cd of the scan to take away, but i asked them to keep it to themselves till wednesday. i know that if i had it with me just now, i'd be looking at it, trying to work out how much it's got worse, trying to guess whether it's operable or not. so i thought fuck it, ignorance is bliss, i don't want to know. so just have to get through tomorrow and then - the wait is over.

my attitude to painkillers

2006-01-05T16:39:00.000Z

basically, if they don’t turn your piss purple or stop you shitting for a week, i won't touch them.

iPod nano

2006-01-04T16:35:00.000Z

a review of the ipod nano in the christmas guardian:

"they said there could be no true revolution in the music business until someone devised a product you could listen to music on, but was also thin enough to chop out cocaine with. Eureka."

so stitch that ya bas

2006-01-02T12:20:00.000Z

2005. "Been a shitty year, but the show must go on" - kyle said it better than i ever could. at the start of the year, i had it all to look forward to. i'd worked my arse off for three years to get to where i was in march, with a masters degree, java certification, a new (dream) job, and an offer in on a new flat in leafy isleworth. what could possibly go wrong? well, we all know the answer to that. i'm not one to wallow in self-pity, i may indulge in it now and again but though it's fun for a while it doesn't really get you anywhere. having said that, it's fucking frustrating to look at where i was a mere 9 months ago, and the shit i've had to go through since then. but i don't feel sorry for myself, i really don't. i've been very fortunate in my life, i've never wanted for anything, i've never gone hungry or cold, i've got lots of real friends and my own flat, a fantastic job in an understanding company, and i've been blessed with a great musical taste and fashion sense (oh yes i have). so what's to complain about? no matter what happens in this next year, whether they can operate or not, whether i have to give up work or not, and whether, ultimately, i get better or not, i don't feel sorry for myself. i've had a great life so far, and nothing can change that.

i love christmas i do

2005-12-30T14:47:00.000Z

well that was a splendid few days if i do say so. managed to get the tree decorated and looking lovely by the time mum had settled in, and had a few really chilled days doing nowt but watching telly and playing on the computer. it was really good having mum down, wasn't stressful in the slightest which was cool. christmas itself saw my uncle come down from peterborough with the biggest turkey you've ever seen. four days later and i'm still eating turkey risotto. i think he was a bit disappointed there were no crackers and we had to eat dinner off of a laptray, but i'm sure it did him good to slum it for a day. i've been caning the wine as i have to give it all up in the new year, and want to have some memories of what it was like. ach, i'm sure a bit of abstinence will do me good *sob*. off to brighton in a few minutes for the new year - not really got much planned, we'll see how it goes. most of me really wants to go home and hide under the duvet till the new year starts again, but judging from what most folk are saying, i'm not alone in thinking that. anyway, brighton here we come!

(nothing but) blood

2005-12-22T21:43:00.000Z

went for my ct scan at the marsden on tuesday, and admitted myself there, not the royal london. the wilson ward at the marsden was alright, better than some i've been on, but i'm becoming really sick of being the only youngblood on wards full of coffin-dodgers. then again, i might be a coffin-dodger myself so best be nice to them eh. there was one cockney wanker in a bed opposite who would *not* quit with the yap, blah fucking blah from the moment i got there till lights out, then again from half past stupid in the morning. christ, won't people like him learn there is a certain fucking dignity in quiet fucking contemplation? dick.
the ct scan results came back with a friendly registrar who turned up with "do you want the good news or the bad news", which was strangely comforting - at least there was good news! the bad news was, as i suspected, that i had a blood clot on my lungs (properly called a pulmonary embolism - cute!), which explained the coughing up blood and the pain. good news was i got sent home on the day, so only spent one night in hospital.
so the upshot now is, having been to the anti-coagulation clinic today, i have to self-inject a drug called tinzaparin, till the new year when i start taking warfarin tablets. this pissed me off when i was first told - it means a clinic visit every couple of days for a month while they tweak the dose, it's another huge disruption to work and it's yet another external sign that i am indeed a very sick person. but hey, it's better than hoiking up blood and not being able to breathe.

not funny

2005-12-19T21:21:00.000Z

wow, what a hectic last few days. started off well enough in leeds, visiting ewen and lucy - saw lots of old faces, it was great. but that night i had a sharp pain in my left chest, right under my ample breast :) it was really sore, but chugging some morphine got rid of the pain and i put it down to something muscular. well, wasn't thinking that the next day on the train when i coughed up a big lung nugget filled with blood. if there's anything scarier than looking into a sink smeared with blood that you've just coughed up, i've not experienced it. so last night was the night from hell - woke up every couple of hours in burning agony, unable to breathe properly, waiting for the pills to kick in. i can't explain how much pain i went through - it's impossible to describe, even to think about, unless you're going through it. went to the marsden today and had an x-ray and blood tests. they admitted me - they need to check it's not a blood clot on the lungs which is apparently A Bad Thing. so tomorrow i go down to the royal london and check myself in. no-one can tell me how long i'll be in for, or what tests i'll have to do. perfect timing, with my mum just arrived and 5 days to go till christmas. i'm feeling okay about it now, but i'll never forget how i felt on the train yesterday - i nearly threw up i was that scared. i didn't stop shaking for the rest of the journey. surely this can't be happening already? just hope this is a one off and not the first of many...

flopsy, mopsy, dinner is served

2005-12-16T18:04:00.000Z

went to vitaorganic, a vegan/raw food reataurant in soho, with catherine last night. man it was a game of two halves. the food was fantastic and cheap, and the service was really helpful, but they'd run out of wheat grass, half the menu (literally) was off, the coffee machine was broken, the toilets were a mess and they didn't take plastic - which i didn't find out till it came to paying the bill. but they did have a sugar- and dairy-free strawberry 'cheese'cake, the first dessert i've been able to eat in weeks, so i've mostly forgiven them. they had some books on the shelf, one called 'spiritual nutrition'. cat pointed out there's nothing spiritual about a lentil and i have to agree. not so much jesus wants me for a moonbeam as jesus wants me for a mung bean.

balls

2005-12-13T18:01:00.000Z

paul hunter was on the telly playing snooker last night, midway through a chemo session. he lost 9-2 against Ding Junhui, but another way of looking at it is that he won two frames of snooker against 60th best player in the world while on chemo. fucking remarkable, i just can't imagine how he did it - i know there's planty of times on chemo when you feel ok physically, but how he managed to keep his attention, and keep his strength up over the two days, is god's own mystery.

we plant the seed, nature grows the seed

2005-12-11T17:55:00.000Z

went to a veggie restaurant last night with pete n tash and nick n tracy. the clientele were surprisingly healthy-looking, they only looked a bit pasty. it was a really good menu, though it's starting to hit me how hard it's going to be to eat out and avoid dairy and sugar. having said that the yam gumbo tasted a lot better than it sounds. there was nothing on the dessert menu i could eat, so i had an amaretto, which was grand till nick pointed out it was probably swimming in sugar. also indulged in some wine which will probably be off the menu after i've seen the nutritionist. shit. the question is, is life worth living without alcohol, let alone chocolate and cheese?

business as usual

2005-12-07T22:13:00.000Z

today was the day i was supposed to find out whether or not my cancer is operable - so, as i'm sure you can imagine, i was a bit nervous as i made way to the brompton and the marsden for my latest CT scan and surgical appointment. due to the abandonment of my socialist principles, both of these were done privately - fuck knows how long i'd be waiting if i'd gone nhs. the scan itself was the usual rigmarole of nurses trying to find a vein which actually worked to stick a needle in, before giving up and fetching the doctor. after the scan, i was actually given a cd which contains all the images to take home with me - so i can do a show and tell of my rotten lungs to anyone who comes round the house! that's better than passing round the holiday photos any day i reckons.
so after the scan came the meeting with my latest surgeon, mr. L. i had to wait in this waiting room in the brompton before seeing him, and it was an eye-opener. this was an nhs waiting room, but one for folk who were paying for the appointment privately. now i've frequented a few nhs waiting rooms in my time, and i've got used to chairs being bolted to the floor and squeaky lino. not this one - full carpets, tables with the latest harpers and queen, and a receptionist who served you tea in real cups and saucers. the room where i saw mr. L. was even more mental - proper art on the walls, huge room, and his desk was several times bigger than my boss's. every left-wing fibre in my body was screaming abuse as i sank luxuriously into one of the padded leather armchairs and gave up another tiny part of my soul to maggie thatcher.
so, mr. L. i'm afraid i missed the first part of what he told me because i was hypnotised my his luxuriant moustache - it really was a corker. only a surgeon could have constucted a mouser of such precision, such grace, such beauty, i was totally captivated as it moved up and down, sweeping the words from his mouth. he could have taken me right there and then on his huge desk, i would have been powerless to resist. once i'd come back to earth, he took me through the scans and what they meant. ok, here goes. i have multiple lesions on both lungs, a lot more than on my previous scan - but this could be because this scan was a much higher resolution, picking up tumours that the last scan missed. he wants to do another scan in january and compare the two - after that he'll make a decision whether or not to operate. if there are more tumours, then it's not worth operating. if it looks like there everything's the same, he'll give it a go. i'll lose about half my lung capacity in two operations over three months, but the good news is the operation will be aimed at cure, not control. so i just have to wait for a month, and try to just forget it and live normally. easy...

it's a long road

2005-12-02T23:38:00.000Z

went for my first outdoor run for months today. christ it was awful. managed a paltry 4 kilometres in half an hour, had to walk some of it, and nearly barfed when i got home. and it started chucking it down when i was running along the canal - yay, i say unto you, even the gods were pissing on my lacklustre performance. so not a great start, but it felt grand once it was over. i've said to jill (a hypnotherapist, more of whom later) that i'll run with her on the oban half marathon, together with roj and mark. it's next october. what was i thinking? the last 10k was bad enough, it was night time and in november, but at least it was in the south. oban in october? christ, think horizontal rain, sheep flying through the air, pitch black by 2 in the afternoon. can't wait.

back once again with the ill behaviour

2005-11-27T18:55:00.000Z

had hoped i wouldn't be writing this, or at least not so soon, but it was always a possibility i guess.
the background: i went to the clinic at the start of the month 'cos of the abdominal pain that's been waking us up at night. both the doc and i were cagey about sending me for *another* scan - pretty soon i'll be having radiotherapy by default - but in the end the big man agreed it was probably the sensible thing to do. after i'd had the scan, i knew it was bad news the second the big man phoned - if it was good news they usually get the secretaries to do it. the scans were a mixed blessing; no local recurrance (my abdominal pain is residual surgery nonsense), but a number of secondary chondrosarcomas in my lungs. the doc referred me to the royal marsden, where i've been a couple of times.
so, you remember when we were kids, there was a comic which had a strip in it called 'good news, bad news'? each panel in the cartoon would alternate between good and bad news. well, here's my 2005 remix:

BAD NEWS: a recurrance of my cancer in the lungs is definitely a *big* step in the wrong direction.
GOOD NEWS: my chances of survival go up a lot if the surgeon decided he can operate.
BAD NEWS: there is a chance that the cancer is totally inoperable. but if that happens,
GOOD NEWS: the royal marsden specialises is trial drugs for which i am, apparently, a prime candidate for inclusion.
BAD NEWS: according to the info. sheet, the chance of success of these trial drugs is 'low'. however,
GOOD NEWS: i am in touch with lots of practitioners of complementary medicine and therapies, who have lots of experience with people in my position.

so there you have it. you know pretty much as much as i do now. in the next week or so i'll find out whether or not the knifemen can operate. until then, it's business as usual, and keep hugging the trees...

the 10 best things about having cancer

2005-09-22T17:21:00.000+01:00

Complexion - chemo gets rid of plukes, how cool is that?
No washing hair - save time *and* money!
Time off work - no commute, no meetings, no boss riding your arse.
Drugs - free and plentiful, every time you go to hospital.
Dinner - I've lost count the number of folk that have cooked dinner for me :-)
Shaving - I haven't had to shave for six months. and my skin is so silky-smooth...
Gym - the perfect excuse not to go. and you don't get fat because...
Slim - barf yourself thin on the chemo diet!
Conversation - you're never stuck for something to talk about.
And finally... chicks dig scars, right?

witness the shitness

2005-09-20T17:24:00.000+01:00

now that the end is near, it's time to take stock, think back over the last six months, and welcome with good cheer *fanfare* the inaugural shitness awards. this year there are three contenders - the pre-op chemo, the post-op chemo, and the operation itself.
coming in at third place is the pre-op chemo. this was a tough choice, as there were only two cycles, but each one lasted a stomach-churning four days. four days of feeling like hammered shit while attached to a pump is no laughing matter, but on the positive side i didn't end up in hospital when i was neutropenic, and i made some new friends on the ward.
pre-op chemo shitness factor - 7/10. bronze medal.
a deserved second place goes to the post-op chemo. this phase made a spirited attempt at the gold, what with a surprise third cycle, having to self-inject drugs every day, the groaning patient during the second cycle, and the week-long hospitalisation after the first cycle gave me neutropenic sepsis and anemia. but in the end it was just pipped at the post.
post-op chemo shitness factor - 8/10. silver medal.
there was really no choice for the gold. the operation itself came through with such a strong case. there was the 8-hour operation itself, which robbed me of a kidney, half my liver,my gall bladder, an adrenal gland, parts of my colon and lung and so much more. added to that drug-induced paranoia and hallucination, a 3-week hospital visit, a tube sticking out of my side for a fortnight, being stuck in a ward with no air-conditioning in 30° heat, 2 months in recovery, and a foot-long scar across my belly. truly, the judges were staggered with the utter shitness on display here.
operation shitness factor - 9½/10. a well-deserved gold medal.
so here to present the award to the operation is long-time birds-nest and goth supremo, robert smith! *cheers, applause*

robert smith: congratulations, you must be very proud.
operation: well, you know, i knew i'd done a good job, but we mustn't forget the other contestants who did such a good job of being shit as well *applause, whistles*
rs: well let's hope you can keep up the shitness long into the future. mummy, help, the spiders!
o: i'd like to thank the sarcoma which made all this possible. cheers mate!

*applause, cheers, end music, fade to black*

tick tock

2005-09-18T18:24:00.000+01:00

been in the recovery position since thursday, sleeping 12 hours a day - sweet! hospital was over quickly, just listened to my iPod the whole time - there was a kickoff on the ward on wednesday - between two patients! mental. not worth talking about though. guy in the next bed to me was very ill - very very ill. lots of fucked-up shit goes through your mind, but what can you do?
so feeling okayish now - lots of time on the couch. every day another injection, another two pills. it's weird 'cos i know in a couple of days i might have to go back into hospital. you know that james bond film where the bad guy in the diving suit is just about to kill bond, and bond puts a mine on his back? the guy knows that he's got this bomb on his back but there's nothing he can do about it... tick tock goes the bomb. that's how i feel, without being *too* melodramatic :-)

take three

2005-09-12T18:56:00.000+01:00

sweaty palms time again. tomorrow is the last chemo - this time for definite. i'm still not 100% from the last one, i get head-rushes when i stand up too quickly and i've *still* got bruises from where they stuck me three weeks ago. i'm sure the chemo itself will go okay, but i'm worried i'll end up back in hospital this time when my immune system dips. you need to be fighting fit to get through that okay, and i'm obviously not. but anyways, moaning about it won't make any difference, i'm not that bothered, this is my last one and the end is in sight (again) :-) my iPod is primed with a bunch of new stuff and i'm only in for 2 nights. as long as there aren't any groaners next door to me, and they get the needle into me first time, then i'll be fine. see you thursday...

a stunning 180° turn

2005-09-07T16:22:00.000+01:00

having looked up how much it costs to be an idle rich on ebay, it's become painfully obvious that i can't afford it. so - about that post yesterday. haha. you all know i was joking, don't you? just a little jape between me and you, my bestest buddies. you're all great, you know that? *hugs friends* don't worry, you're all my bezzy mates forever. or until i win the lottery, whichever comes first.

lifestyle choice

2005-09-06T19:21:00.000+01:00

went to sloane square today to meet claire and her new baby daughter, daisy. was waiting at sloane square tube and within the space of ten seconds i saw two blokes wearing prada and versace t-shirts - i kid you not! i've lived in hackney for eight years and have never seen *anyone* wearing prada or versace t-shirts. there were dapper gents in panama hats and blazers, and sloane rangers tottering about in all manner of designer gear. juice bars rubbed shoulder with quaint italian restaurants, and boutiques were selling expensive frippery by the mile.
so, my mind has been made up. this is obviously the life to which i should grow accustomed. i have decided to move to pimlico, start again, and become an idle rich. i think i deserve it, i've worked hard and this is my just reward. this will, though, mean i have to sever ties with all of my friends. it's unfortunate, but i'm afraid you'll only hold me back. hey, we've had some great times, but it's time for us all to move on - and in my case, up. so goodbye, pals, it's been great knowing you!

10 arab strap lyrics

2005-09-05T15:42:00.000+01:00

"i can't make boasts about my body
the workmanship is somewhat shoddy
sometimes i overwork my gob
can't buy you gifts - i've got no job"
- general plea to a girlfriend
"i said with me around, she'd never come to harm
and then she took a fork and stabbed herself in the arm
she used to wank me off but i could never heat her up
and she used to tell all her friends that i beat her up""
- one day, after school
"i need a nurse and a mother
i need an open-minded whore
i need a barmaid and a lover
someone to stand between me and the floor"
- act of war
"the room stinks of poppers
and the bog's full of bile
at least i'm not shitting blood again
i always say 'that's the worst in a while'"
- i would have liked me a lot last night
"and i was casually trying to sniff my fingers on the way back home"
- islands
"when i'm going, i'm going the viking way
lay me in a boat with my favourite things and
set me on fire, then send me on my way"
- the night before the funeral
"thoughts of your sister helped us wank"
- driving
"bird number one taught me i shouldn't trust
that's why i find unfounded doubts abound
bird number two proved that with none we've nothing
now i'm only happy when you're not around"
- soaps
"and i know that it was probably just those e's
but be a bit more thoughtful next time, please"
- driving
"it was a good night, everyone was nutted and i ended up dancing with some blonde girl. i thought she had been quite pretty until last night when matthew informed me she had in fact been a pig"
- the first big weekend

sofa adverts

2005-09-01T20:49:00.000+01:00

next time you're stuck in the house watching daytime telly as your brain slowly leaks out of your ears, keep a special eye out for sofa adverts - there'll be one sooner or later. now keep a close eye on the actors as they bounce happily onto the luxury sofas that can be yours for only 48 interest-free payments. they're fucking munchkins! look at them, there's not a one over 5 foot tall. where do they get them, the jockey club? do they think that just 'cos they've got a bunch of hobbits sitting on their sofas, we'll be tricked into thinking we're going to have a couch the size of an oil tanker in our living rooms? for shame, dfs. we are not fooled.

one long extended moan

2005-09-01T19:57:00.000+01:00

ok, i'm listening to ministry as i write this, so there won't be bunny rabbits or candy floss today. if you don't like andy when he's whining, skip this post and come back tomorrow. i promise i'll be in a better mood then.
ok, so first of all, i was in a quite *stunning* amount of pain this morning. the drugs to increase my blood count have really kicked in. now here comes the science bit - neutrophils, the type of white blood cell that are low in my body, are manufactured in the bone marrow. and so now my leg bones and lower back are in agony as the blood cells start to come back into my bones. the website says the pain will be "mild" - grrr. some of the patients on the ward warned me this might happen, but nothing can prepare you for the intense waves of pain. i've been on codeine all day and i can still feel it.
so secondly, i have officially gone mad by being forced to stay indoors and not see anyone for the last few days. i think the worst is over now, and i should be able to go out into the real world tomorrow after i go for my blood test, but of course i've forgotten all my social skills and will probably end up running naked down oxford street baying for the moon. and i have had *enough* of the discovery channel, which - together with mtv2 - i have been staring at slack-jawed for the last few days. if i never see another documentary on our friend the misunderstood great white shark, or the world's blankiest blank (when cashpoints attack!), it will be *too soon*.
and thirdly, why are hard-fi so popular? they're a bunch of no-mark chancers from staines and if i saw them playing at my local pub i'd buy some peanuts just so that i could throw them at their mouths in the remote hope that they'd all have an allergic reaction and die.

tell me something i didn't know

2005-08-31T18:36:00.000+01:00

so i was having a snooze this afternoon when i get a phone call off the doctor. he tells me that i *do* have another cycle of chemo left to do. i can't believe it. to go through all that shit, to think it's all over, and then to be told you've got to go through it all again. it ripped my guts out. have to get more time off work, all my holiday plans are for shit, another few nights in that fucking hospital getting pumped full of shit. not a happy bunny. at least i didn't have a pop at the doctor - i must be getting more chilled out in my old age...

needles and pins

2005-08-31T11:35:00.000+01:00

every morning after chemo, for the last two cycles, i've had to inject myself with a drug called filgrastim - a drug that stimulates the growth of neutrophil - basically, your white blood cells. so every day, i take a syringe out of the fridge, stab it into my leg, and inject. and you know what? it doesn't get any easier no matter how many days i do it. once, i was brave enough to watch the needle slide its way into my thigh, but usually i just stare at the ceiling and grit my teeth.
i'd make a crap junkie.

the boy in the bubble

2005-08-31T11:27:00.000+01:00

another beautiful day in london, and here's me in the middle of my week-long house arrest. no park for me :-( i swear i'm going up the walls... maybe some sort of giant hamster ball could be constructed to allow me out into the real world - *draws up plans*. went for my blood test today, apologised to the doc for being a bit snappy with her last week. turns out the groaner won't be annoying anyone else - he died after i left the ward. anyway, all *seems* to be in order, though i did get some alarming news - apparently i might have one more cycle of chemo that no-one's told me about. i'm waiting for a phone call if it turns out i have to go back in. this is a total sickener, though i'm pretty sure i won't have another one - i'm sure i remember the big man saying i only had the two cycles after the op. fingers crossed... felt shit yesterday, my temperature went right up into the 37s, but nowhere near enough to get me into hospital. if i can make it to the weekend then i'm home free. tick tock...

nearly there

2005-08-29T13:09:00.000+01:00

so i'm sat at home, finally feeling human again, after the usual four day car-crash of feeling like shite. who else gets a four-day shitstorm hangover without even getting off their faces in the first place? so i'm tempted to say it's all over, but it's not. i can already feel my body sliding towards the week-after neutropenic phase, when my blood turns to water and all the bugs in my body start to go to town. im not feeling as bad as i did last time, but the huge bruises on my arms, the dizziness i feel when i stand up, and the dead pressure in my belly where they operated on me, tell me my body is not behaving itself. i'm on antibiotics, and that might just stop the temperature and infection that put me back in hospital last time, but i've already packed my hospital bag and i'm waiting to see what happens when i go in for my blood test on wednesday. until that's all over, i'm not going to say it's over. but it's so close, so close, i can taste it...

the man in bed 12

2005-08-29T12:54:00.000+01:00

last chemo. was a bit of a stress reely. i was put into bed 13. unlucky for some? unlucky for me. one of the ward staff told me there are some wards where there *is* no bed 13.
anyway, leaving aside the 12 attempts they made to put in 2 lines (my arms are a mass of bruises, the longest runs six inches along my right arm), the worst part of this chemo was the man in bed 12. he was a groaner. he groaned most of tuesday, then *non-stop* from wednesday to when i left. and i do mean non-stop. groan... groan.... GROAN.... **GROOOAN**...... groangroangroan... groan... groan... ad fucking nauseum. everyone was wound up like clockwork. on wednesday night another guy complained, so i complained too. the nurses went over.

nurse: "what's wrong? are you in pain?"
man in bed 12: "no, nurse."
n: "then why are you groaning?"
mib12: "i don't know, nurse. groan."

in the end, i begged a double dose of jellies off of the night nurse. mmm. anyways, upshot was i was in a reely bad mood on the thursday and snapped at the doctor when she came to sort out my takeaway drugs. need to apologise to her, though i'm sure she's had a lot worse than me.

i don't like mondays

2005-08-22T15:25:00.000+01:00

you don't have to be working to hate mondays, you know. i got absolutely pissed on coming back from the supermarket, i'm eating sunday leftovers for tea tonight, and it's the day before happy chemo time. so yeah, could be better. but let's turn that frown upside down! rain makes the trees grow! i don't *mind* leftovers! and it's my last chemo! there you go, i feel much better already.

summertime rolls

2005-08-19T10:07:00.000+01:00

mmm summer. season of mists and mellow fruitful.... oops sorry wrong time of year. anyway i've been living it up the last couple of days - eating sushi in covent garden watching the world go by, afternoons in the park sunning myself, mornings taking the bike round the canal for a bit of exercise. it's been GREAT. this morning is a different proposition though - i was woken by thunderbolts and lightning (very very frightening) at stupid o'clock. so no park for me this afternoon! probably just as well, everyone's getting sick of me texting them and asking if they fancy meeting up in the park for a pint hehheh.
slightly less happy is my hair falling out again. it's a bizarre process - first it stops growing. my stubble - such as it is - stopped growing when it was long enough to be noticable, but not long enough for me to be bothered to shave it off. eventually it just all came off when i washed my face - if only it was always that easy! the hair on my head is coming out in clumps, but i'm being extra careful in the hope i can squeeze one more weekend out of it before i shave the whole lot off. it's one of the more depressing aspects of the whole deal - i feel like a right spud. just call me cueball. nurses are always talking about how important 'body image' is and how such a radical alteration to said image is obviously a shock to the system. couldn't agree more.

2005-08-16T16:10:00.000+01:00

home at last! and the sun's come out to boot. and i'm drinking ice-cold appletise. *and* i'm listening to the foo fighters. *AND* i'm cooking for bruce and lynne tonight. what a great day!
anyway, instead of one long rambling entry about the last few days, i'm going to write each day as it happened and post it under that day's date - makes it a lot tidier. so you'll have to look under this post back to wednesday 10th to see what happened since then.

dazed and confused

2005-08-15T17:26:00.000+01:00

home today wheee!!!! had my femoral line taken out - that hurt a fair bit, and few things turn the stomach more than watching a nurse pull a line that's nearly a foot long out of your leg. got a lift home from bruce and spent the night eating celebratory pizza and watching a suitably braindead movie - blade:trinity. bloody hell that's a bad movie.
now the bizarre thing about being in hospital for any length of time is how quickly you become institutionalised. every four hours you have your ob's taken. you are fed at set times, you are told what you can and can't do. i'm not comparing it to prison but it is very regimented - maybe more like the army. so when you come out, you do feel very strange - almost in shock. the sense of freedom is hugely welcome but also a bit intimidating - you do feel very uncomfortable for a while. i do know i spent a lot of time staring into space when i got home.
or maybe i'm just over-analyzing it. wouldn't be the first time eh hehheh.

2005-08-14T12:00:00.000+01:00

came off the pump today, so i was a free man. on top of that i was given permission to get off the ward. was out of there like a ferret up a drainpipe. went out to carluccios for lunch - if i never have hospital slop again it will be too soon - and was tucking into my sardines in raisin and pinenut marinade, when i bumped into my doctors. god i felt like a guilty schoolboy caught behind the bikesheds, then i remembered i wasn't doing anything wrong, phew. they thought it was hilarious i wasn't tucking into the haute cuisine on offer on the ward.
today was the first day my temperature stayed below 37.5 - the magic number above which they consider you to be pyrexic. i could smell freedom at this point...

2005-08-13T17:11:00.000+01:00

weekends on the ward are a soul-crushing affair. during the week there's a buzz about the place, but at the weekend there's no admissions, less nurses, and only a couple of doctors on duty. on top of that i spent the whole day attached to a pump cos some doctor had decided i needed more fluids - so i couldn't even get off the ward. iain and sachiko came to visit which was great, and there was a bond movie on as i recall - apart from that it was tedium made real. just like prison except without the fun and games in the shower. by this point though, the antibiotics were really kicking in and i was starting to feel human again. yay!

haemoglobin is the key

2005-08-12T12:00:00.000+01:00

temperature started to come down today, but was still spiking in the high 38s. the highlight of the day was the doctor telling me i was anaemic, and needed a blood transfusion. several blood tranfusions in fact. now i hate the whole blood thing, it's always turned my stomach when i see other patients with bags of blood being pumped into them. so i'm afraid i lost it a wee bit, spat my dummy out, and nearly refused to let them do it. luckily beth was visiting at the time so she calmed me down. never mind, said the doctor, we'll soon have some colour back in your cheeks haha. good luck pal, i said, there's been no colour in these cheeks for the last 32 years, it'll take more than a few bags of blood to change that. the doctor decided at this point he'd try his compassionate bedside manner somewhere else - i was obviously a lost cause.
one of the doctors caught me sneaking back onto the ward after i'd been out for a fag - he could smell the smoke, and he tore several large strips off me. i hung my head in shame. didn't smoke for the next two days after that.

touch me i'm sick

2005-08-11T12:00:00.000+01:00

today was a real scunner. started off innocuously enough, usual round of antibiotics and fluids - the stuff they usually do when you're admitted after your immune system stops working. about midday though, they took my ob's as usual and my blood pressure came in at 90/50. well the doctors didn't like that at all - next thing i know i'm being given a bag of platelets and i've got two doctors feeding me a huge syringe of lorazepam, prior to inserting a femoral line (a line that goes from your groin into your abdomen, and lets the doctors whack a large amount of whatever they want into you very quickly).
now, don't ask me why, but i'd been in the bathroom a couple of days earlier drying off and i thought to myself - you know the wee man's looking a bit shaggy isn't he? hasn't had a good trim since my hair started growing back. so i gave the wee lad a bit of a spruce, made him look all nice and tidy. so i felt quite chuffed when, two days later, i find myself lying on my bed with my trousers down while two doctors stare at my knackers trying to work out where to stick the line. i'm sure they were thinking - wow, this is a man who takes good care of his bollocks. good job i hadn't gone overboard though, and shaved a love heart into my pubes or anything.
ANYHOO, the line went in okay, partly because i was tuned to the moon by this time. didn't stop the pain when they stitched the line into my thigh though - that *was* painful, but it just didn't seem to matter very much. rest of the day was spent feeding me huge amounts of antibiotics and fluids. temperature peaked at 39.6 - i was getting quite used to doctors skidding into view by this point, which they did again when the nurses told them that :-)

2005-08-10T12:00:00.000+01:00

managed to make it through the night without my temperature getting too high, but still felt rough as badgers this morning. got a taxi into the hospital, couldn't face the tube *shudder*. anyway, the doctor took one look at me and admitted me on the spot - turns out my immune system had crashed spectacularly, and the site of my operation had vecome infected. turned out later on my white blood cell count was 0.0 - yay! anyway, they were worried that i was filling up with all sorts of gunk, so i went for ct and ultrasound scans - luckily there was nowt too wrong.
so the biggest problem at that point was getting me a bed. i'd been out of the ward getting scans all day, but i was back there at 4 o'clock and i felt like hammered shit. i could tell things weren't going well when my consultant oncologist - the big man - and all his staff wanted to check me out. ended up being examined by like 5 doctors, all prodding me and going 'hmmm'. not something to inspire confidence!
after that,all i wanted to do was lie down, but there was nowhere for me to go - i ended up lying on a couch in the day room and whimpering every now and again. at 7 i really wasn't feeling well so i got a nurse to read my temperature. it came in at 39.1 - funnily enough they got me a bed as soon as they found out i was about to explode. and so - at last - i got to lie down and spend the rest of the night staring at the walls whilst being pumped full of fluids. bliss!

2005-08-09T19:53:00.000+01:00

my temperature is 38 on the nail. technically i'm supposed to call in now, but i'll wait and see if it gets any higher. 38.5 and i call the ward. if it doesn't come down i'll have to go back into hospital, probably onto another ward, and get hydrated and fed with antibiotics. this wasn't supposed to happen till thursday! bruce is crashing here just now but he's not oncall tonight, so he doesn't have the oncall car - it's always better getting a ride into hospital, taxi drivers don't like it when they have to stop for you to barf hehheh. anyway, even if i don't go in tonight i'm going in tomorrow for blood tests. looks like i've got another couple of hoops to jump through before this is all over!

2005-08-04T20:15:00.000+01:00

home. sick.

2005-08-01T19:37:00.000+01:00

it's the night before hospital and i'm feeling how i usually feel the night before hospital - a bit scared, sweaty palms, restless, want to phone people but don't 'cos i'd just end up rambling on about my own problems for about half an hour. i spent the day tidying up the flat so it won't be too much of a stress when i stagger back here in three/four days, sick to my core and ready to cry after yet more punishment. had to go down to tesco today to stock up on food n stuff - i won't be able to leave the flat for a couple of days after i get home. luckily i've got what the folks at the hospital call a good 'support network' - i.e. mates who don't mind dropping stuff off when you phone them and ask in a trembling voice to bring round some hobnobs.
it's just like the dentist. you want it to be over but really, you don't want it to happen at all.

2005-08-01T19:32:00.000+01:00

so i've been looking at flats round herne hill, tulse hill, brixton. i was walking up brixton hill yesterday on my way to see a flat (it was rubbish), and i see a lass sprawled on the pavement, crying - no, wailing. and this guy was leaning over her, shouting "why you been lying to me? why??". and everyone else was just standing there, kind of like it was some free street theatre - including a group of boys who could easily have fired into the guy if they wanted to. i mean to say - if pimps can smack up their hookers at 11 in the morning, what's the place going to be like at 11 at night? so i said - fuck brixton. the place is bad news.

note to self

2005-07-30T22:23:00.000+01:00

make sure you clean the toilet before you go into hospital. there is nothing worse than sticking your head down a toilet that is just as minging before you barf into it as it is afterwards.

2005-07-30T22:02:00.000+01:00

so i was at stockwell underground yesterday (wipeboard up by the entrance - NO FATAL SHOOTINGS IN -8- DAYS) with charlie. we were sitting waiting for a train to leicester square, and this apprentice jakey walks past (you know apprentice jakeys, they have the tin of super on the go at 11 in the morning but they've still got clean clothes). anyway, this a.j. was walking up and down the platform, yammering into his mobile phone at some huge volume. now charlie and i can't have been the only ones who were thinking - how come he's got reception on his mobile? i didn't, no one else did. why was he pretending to be on his mobile? he wasn't drunk, or *obviously* crazy. i didn't have the guts to go up and ask him if he had a crazy new mobile that you could use on the tube. he might have thought i was trying to steal his tin of kestrel.

the year so far

2005-07-28T20:54:00.000+01:00

it's a rollercoaster, as mc t-bag used to say. i got my java certification in january, off the back of my masters. after that i finally got myself a decent job as a java/vignette programmer, for the i.t. department of my corporate overlords sky. the day before i was due to sign the contract on a spiffy new pad in isleworth, and a week after the contract was signed (using the blood of several virgins {at least they said they were virgins, i'm not convinced}), my old mucker the chondrosarcoma returned. at the start of april i went into hospital for two cycles of chemo (ifosfamide), followed by a massive operation, which took ages to recover from and involved the worst stay in hospital of my life.
next week i go back into hospital to start the final cycles of chemo, followed by a wee break and then back to the tedious drudgery of humdrum existence. i can't wait.

2005-07-28T20:15:00.000+01:00

i should have started this ages ago, but as ever i had a spiffy idea (host the blog myself on my own machine, using Apache etc etc) and then failed to follow it through (the configuration was a nightmare and, though time is the one thing i have a lot of at the moment, patience is one of the many things i do not). then isabelle, my canadian friend, suggested getting blogger to host it and then just point the shallowgravy domain name to the blogger ip. well duh. so now i'm up and running and hopefully this will be more than a flash in the pan.