catchup

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.