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23rd April, 2010... Due to get drilled, just waiting to get scooped up. Scrubbed, wearing plastic pants and stockings and a surgical gown that doesn’t fasten, leaving me largely exposed to old men. Oh well.

I have got a LOT of positive feedback from my daft little blog. I have no idea why, the prose is lame, the idiom poor, there’s sod all structure, it’s rambling and generally a pile of toss. So thank you, because I assume that the people who liked it, did so because they think it was reflective of me, which is lovely!

I reckon I’ve found the next stumbling block: pride. This is good. I’ve known it’s there and this is a good opportunity for kicking it in a bit… I’ve had people telling me I’m being brave, that I’ve got big balls, pretty much non stop since I first got the news that I’ve got a tumour in my head. Wrong. To be brave, you need to be scared. I’m not. The people who are brave are the ones who are genuinely concerned about what happens to them. When I was about eight, my cat Thomas died and I cried my eyes out for two days straight. I really adored that cat and it was completely mutual, he was my cat, he’d follow me around continually from the day I was born, especially if I was even remotely ill. Then he died. I think, though I don’t really remember, that I got to figuring out then that everything, everyone, was in a continual state of flux and decay… that we think of ourselves and others who we know and love, as having identity, but we don’t. The me of yesterday is not the me of today, and if there is a me of tomorrow, of which there’s a 95% chance, he’ll be different too. So you either try to hold on, which is futile, or you learn to let go. Easier to let go of yourself than of others I think, but either way, since then I have never really grieved when anyone I’ve known has died. I miss them, I think about them, but I’m never stricken with grief. Perhaps I’m simply a psychopath. No matter, if I am, then I’m a happy psychopath, and even if I am a serial killer, you can’t prove it, or if you can, you should be scared…

Can’t wait for the broad beans we planted last month to be ready!

I think I may have found another little vocationy thing squeaking at me: palliative counselling. It’s hugely important to look after people as they reach the end of life, and for them to be in good spirits when they reach the awfully big adventure. Far too many are stranded alone, under fluorescent lights, scared, with nobody to help, aside from the God squad. I could do that. I have a bit of an angle, in that I could respond to the question “what can you possibly say to me?” by saying “well I’ve been half way into your shoes, and I learnt a thing or two, perhaps that could help.” I am interested in the fact that MAPS, a wonderful organisation, has been testing psilocybin as an antidepressant amongst terminally ill patients. Albert Hoffman, who invented LSD, thought it was appropriate for people over 50 years old and only VERY rarely at that. He only took it a few times. He lived to 102. I’ll never be in a position to prescribe, but I feel sure that some of the insight wisdom which such things can elucidate, could be brought about by old fashioned talking. I need to talk to the wonderful Gisela, a teacher at school who is also a doctor, specialising in palliative care. Another bonus is that if you mess up, your clients ain’t around to complain for that long. Bonza.

I have long loved risk. Motorcycles for example. I have taken every care not to crash them, reading up on advanced riding skills etc, keeping a pressure guage in my pocket every time I go out, but there are inherent risks that you can’t account for, even if you don‘t instinctively, and in contravention to what you‘ve told yourself before you go out, feel compelled to “see what it can do“. And other hobbies too. I think that the fact that such things are framed by disaster is what makes them calming. It’s not the manly, aggressive, adrenal type rush that I got with bikes, it’s the quiet, the calm, the clarity that comes with vulnerability, which I relished. I think that’s in part why I’m having such fun with this brain tumour, it’s the same sort of thing of being right here and right now.

I AM HUNGRY. Still on nil by mouth, which kinda takes the piss… was scheduled for biopsy first thing, ie about 7am… four hours isn’t a long time, but I know it’ll be another four before they’re done, so I won’t be eating before dinner. Still, fasting is good! Mind you, I don’t even get a proper answer when I ask where the mini bar is, I mean what sort of B&B is this?

My life I never held but as a pawn: TO PLAY WITH!

If I get out of this pickle, by which I mean get a doctor telling me something that includes words such as “five years”, I think I’ll celebrate by getting a tattoo. I’ve liked them for years but have issues committing to them, I also have issues committing to what I want for supper, so this isn’t too surprising… I like otters, perhaps I’ll get an otter climbing swimming round me… Or perhaps a chicken, a pig and a snake…

Right, still 23rd of April 2010, but POST DRILLING! And it seems to have gone well. When they took me downstairs, in my bed, I was eventually met by one of the most beautiful members of the medical profession in the UK. Has to be. I mean nurses are meant to be attractive, but frankly the frequency of seeing a nurse who isn’t in practice a gravel eating ditch pig, is like seeing Leopards on safari. In Wolverhampton. She was an anaesthetist. I liked her, she was witty and friendly too. I announced that there was absolutely NO WAY that her paltry anaesthetic was going to work, and that I was going to stay conscious throughout just to prove I could. I was attached to some lines and asked to count down from ten. “This isn’t going to work TEN” I said. “Not a chance, NINE. Ain’t happening, EIGHT. Not even the slightest effect on my cognitive abilities or level of conscious awareness, SIX.” “I still know how to count…” Then I got strangely distracted and the next thing I noticed was her leaning over me three hours later. Remarkable. I was a bit confused and said “angel or nurse?” “What?” She asked. “Angel or nurse?” I repeated. “Am I alive?” “Actually I’m an anaesthetist.” She said. Oops. Oh well, alive’s pretty cool, though I‘d have been perfectly happy had she been one of 72 consolation prizes for non survival... It got even cooler when her colleague stuck a quarter syringe of morphine in my arm. Funny thing is I wasn’t in any pain. “Still hurts like hell” I said. She gave me some more. I’d got her three quarters of the way through the thing before she seemed to figure out what was up, or just get mean… Then it was back to the ward, since which I’ve been on paracetmol and codeine, not because it’s started to hurt, but because I don’t want it to.

SO. Time to reflect, take stock, figure out how it all went. Very well I think. I’ve just been for a wander up to the 9th floor, which has a great view over the city (I’m in Denmark Hill, near Brixton). It’s cool, I feel fine. Little bit wobbly, but not enough to tell the nurses I’ve given up lying down and taken to wandering (banned for the first five hours, and I was meant to tell them, but they’d only have tried to stop me and then insist on an escort and time limit…).

I knew that in all probability, I was going to be fine at this stage. 1% of it all going wrong and me dying on the table, 3-4% of “complications“. I got on the right side of the odds it seems as Rachel and my parents dropped by and thought I seemed fine. I’ve got some odd shaved patches on my head and massive respect for “stealth MRI” scanning. Very clever, I like. So, I’ve had a hole drilled in my head and something stuffed ten centimetres into my brain and a sample taken… and I’ve got away with it. Wednesday is the next hurdle and that IS a big one. More so than today at least, even though it’s only a conversation and today was surgical.

The NHS couldn’t organise a piss up in a brewery, and given the reaction when I asked for the wine list when my supper was brought, I’m not convinced they’d even bother trying.

Yep, I’m recycling jokes (for those of you who Facebook). Sorry, I’ve got a brain tumour, steroids, antiepileptic pills, codeine, morphine, a hole in the head and the dregs of a general anaesthetic on the go… it’s just how it goes today.

Read a great passage this morning in The Zen Way, all about Zen practice starting off in an individual, balanced on the horns of a bull… you can’t see the way when you start, so how do you know which way to go? Same as Alexander Tech. Makes me think of how the Teacher in an AT lesson always takes responsibility, and they’re extremely careful, not to say anxious talking about how a pupil gets to take over responsibility for themselves, which eventually they HAVE to do if there’s any point to the Technique.

Thank you for all the kind words I’ve had about the website by the way, it means a lot! I started typing just with the idea of sorting stuff out in my own head, then figured it might be useful and possibly relaxing for some of the people I know, then I figured it might, VERY TENTATIVE MIGHT, be of some use to other people who are entering the same kinda thing, and their loved ones. That’s not so much blowing my own trumpet, as attaching it to the exhaust pipe of a Veyron and amplifying it with an amp and speakers the size of this hospital. There you go. It’s here for anyone who wants to look at it, and if it pleases people, I’ll try and turn it into something a bit more eloquent and worthwhile. Any comments, negative ones especially, welcome. benedictwhitehouse@gmail.com

I wanna find some suffering. Yep, that I do. There’s nothing to learn when you’re fine with anything, and neither the tumour, nor the medical response to it are causing me any. So where’s my lesson? Earlier I mentioned that I’ve been getting people telling me my blog’s good and they think I’m really brave… and I can sense that I’m feeling PRIDE in this… the chicken strutting its stuff.

If you aren’t familiar with it, and you should be, there’s a trinity in the middle of Buddhism. A strutting chicken is pride. It claims responsibility for a person’s actions, their achievements, their cool. It leads to the boar. The boar roots in the ground, its tusks flicking dirt up into its eyes, blinding it. Enter the snake. The snake, literally blinded by anger, can’t see other people’s positions, sees them as unreasonable, in opposite positions to it, competition, other, and turns to hate.

Pride, Blindness, Hate. And then it repeats, because the snake separates us from our fellow man, and when that happens, we can start to see ourselves as better. Particularly if your IQ was 140 when last tested. Ain’t now. And that, that turns you into a clucking, strutting little chicken. If I’ve been accepting all the kind words about the blog and my attitude, it’s because I’ve been claiming responsibility where it ain’t due, there’s no I in such things, not when they’re working well. Not mine. So I realise I’ve been being a bit of a dick. And that’s not fun, that’s a sort of suffering, because I realise I won’t be able to take that cosy pleasure again. Good!

I love the incredibly silly and obvious questions you get asked during an examination. “Shut your eyes, I’m going to press on your hand, tell me if I’m pressing up or down… ok now touch your nose”… I love these questions because it’s obvious from the fact that they’re asking them, that people get them wrong… so it’s not a test of skill but a test of impairment. Serious impairment at that… but I still, STILL, despite knowing this, can’t get it out of my head that it is a test of skill, so I try and perform the operation as well as possible. How silly is that! Yes, I have touched my nose with great dexterity there nurse, I hope you noticed that it was the best example of nose touching you’ve seen aaaaallll day long! Boy I can’t wait to be out of here… the old git opposite is snoring, they young chump next to me is whittering with a nurse, there’s a clock ticking and it’s hot enough to cook steel. Oh for a single room.

Right, it’s Saturday morning, 24th April, 2010. I AM READY TO GO HOME. I feel normal enough and they’re only giving me cocodamol. If they’re only giving me pain killers I can get in Tesco, then the only thing keeping me here is the patronising instructions about not going for a stroll or closing the curtains round my bed (like I’ve been sleeping monitored for the MONTH while they waited to get me here) and the food. So I’m going to get my stuff together and discharge myself. All over the nurse’s face.

Am I being completely unreasonable for getting annoyed with the NHS? I know they’re doing their best by me, but that doesn’t mean it’s good enough. They chat so much, and do so little. “Ok, I don’t know the answer to your question, so I’ll send someone round who does” is a stock response, and nobody EVER comes… and dates for escape… this was the same in the last hospital. I completely understand that it’s not possible for them to say “ok we need you here for the next three days” and stick to it, because you don’t know what those three days will bring, what symptoms will display… but you could give an estimate. As a project manager, if a client asks me when their kitchen will be ready, I feel it my absolute duty to give them an estimate. I will explain that there might be problems with sourcing materials, tradesmen, scheduling other tasks etc, but I’ll try and keep them in the loop because it’s their damn house and they have a right to know. Well this is my damn head and nobody seems to give a monkey’s. I was due for biopsy at 7am yesterday and it happened at half past three. I was due for release this morning and a doctor won’t even come and discuss this with me until “perhaps 6pm”, fat bloody chance he’ll be here by then. A little communication would go a long way.

I have two taps in my arms, the sort of nylon stay in syringes they like to jamb into you and leave there. Why? God knows. I’m clearly off injectible painkillers, no drips needed, no more general anaesthetic… why are they still there and causing irritation? Nobody knows. Not me, not the nurses, but it’s easier to leave them there than to take them out and have to think about it. So I look bionic and feel like a cripple.

What is the point of all this whinging? Boar. I think. The communication’s so poor that I’ve started to build up a strong “me vs. them” relationship to the hospital staff. We’re not on the same side. If they whittered a bit less and concentrated a little more, this might not happen, so I’m also feeling arrogance and superiority… I mean I put a LOT more concentration into building someone a shelf, not to mention Alexander work, than they put into dealing with my brain tumour, so it’s perhaps unsurprising. It is nonetheless unforgivable. They are doing their best, and if it’s not good enough (which it isn’t), it’s my job to help them do it better, not just get cross and resentful. It doesn’t help that this ward is scorching hot, I desperately need fresh air, and there’s absolutely NONE to be had. I know what’s going to happen when Rachel gets here and I want to go for a walk with her, they’ll try and stop me, because when the doctor comes round, I might miss him. Sorry people, but if you won’t give me any info on when that might be, you’ve got to deal with the consequences, I’m a human being, not a cow on a farm. Nurse got me to take swabs from my nose, mouth and groin and put them in vials to check for MRSA. Was on his mobile at the time. “Yes, yes, yes, of course, yes, absolutely, yes, I will, totally, I’m at work now, please, can I talk, yes, yes, can I talk to you later, yes, yes, I love you too, yes, yes…” It was his whinging wife. “Oh no, I have got all the labels wrong, these are not the right labels” he says. “Don’t worry” says the sister/ nurse who’s supervising him, “just hand them in quickly for testing, they’ll never notice.” Oops. Do they just not care?

Next little hilarity was the swap over from day shift to night shift. Night shift senior nurse is cross with me. “You have no documentation.” “I know. Can I have some?” “You have no documentation” this is going well. “I know, I never got a letter from the hospital, I’ve had about zero communication from anyone in the NHS in the last month, when I turned up here you lot had no idea who I was and didn’t have a bed for me, despite having phoned and told me I had to come in “as quickly as possible” (despite my having phoned up to ask for a time slot THREE TIMES that day and being told that I’d just have to wait and see)… and I’ve been waiting to see a doctor since 6.30 am. No, I don’t have any documentation, but I WOULDN’T MIND STARTING. Might make me feel slightly more like I actually exist.



Hospitals are the sites of such hilarious displacement. “Do you want an extra pillow sweetie” “no thank you, I’m fine.” “Are you sure?” “Posistive” “Tell you what, there’s one on the cupboard just by your hand, I’ll put it a quarter inch closer to you, that way you can get to it easier if you change your mind” “fine”… “are you sure one extra pillow will be enough?” “Can you leave now please?” And then there’s the transference. One minute the doctor’s the missing father figure who is going to answer all your problems and set you up for a fulfilling and productive life, the next he’s a useless bastard father figure who’s probably smashed on half a litre of vodka and doesn’t give a toss about anyone apart from his stupid self. I should know, I’m doing this oscillation every few minutes, though to be fair, it‘s almost entirely negative by this time in the afternoon. I‘m nice to the doctors when they‘re here, but they never, NEVER are. Bloody nurse just had the nerve to ask me if the registrar had been in to see me yet. “Er that’s a NO.” “oh, I wonder why”… “What’s he doing here anyway, this is a hospital isn’t it?” The git followed this enquiry with standard operating procedure for any unwanted question. Leave, with no further explanation, pausing only to take off the latex gloves he’s just used to examine the man in the bed next to me… and put them back in the box! That’s great. Haven’t seen him since. Nurse who offered to get my tap taken out has been carefully avoiding me too. Grrr. I might just pull it out and throw it at her.

There’s a relationship between capacity to concentrate, and having a fixed objective ahead. I am currently waiting for the next in a long series of Godots, namely the registrar. Then it’ll be Wednesday’s visit, then it’ll be chemo/ radio/ death… whatever. When I have something with a time scale to wait for, I can get on with stuff, when they won’t give me any idea of how long I’ll be waiting for, it is all but impossible to settle to anything. Lol cats and Top Gear magazine are as cerebral as I can currently manage. Oh dear.

15 hours late and counting. The alleged doctor, who’s allegedly going to see me is a cunt. Ok, make that 18 hours and he’s even more of a cunt. 6.30 am “doctor will be here any minute to see you.” 8am “Any minute now, don’t go anywhere.” Noon: “He’ll be here any second.” 3pm “I promise you he’ll be here by 6 at the latest.” Well, that was a choice little lie from a nurse called Vandy, who happens to knock off at six, meaning it was a good time to claim the doctor would see me, because it meant he didn’t get any more questions out of me till his shift finished. 9pm, with Rachel and Da having been hanging around to see him for over an hour: “he’ll be here in ten minutes” and so it bloody goes. It’s now nearly half past midnight and the bastard’s 18 fucking hours late, and I’ve been locked in a boiling hot ward all day… I’ve tried to go for a stroll, to get some fresh air and move my limbs, and what does the bitch nurse say? We’re all extremely busy” (I’ve never seen a team of humans move in a slower or more desultory manner in my whole life) “and besides, the doctor will be here in a minute.” “I understand how busy you all are, believe me I do, and I have every respect for you running the ward as you see fit, but after 18 hours, I am finding it hard to believe anything that’s said to me.” Well that went down like a shit sandwich. “You can’t go for a walk, it’s for your own safety.” WHAT??? Apparently it’s due to the time of day. Leaving aside the fact that as far as I am aware, there is no causal link between time of day and propensity to having a seizure, I am flabbergasted by her cheek. “I’d have gone for a walk six hours ago, BUT I COULDN’T, BECAUSE I WAS TOLD THE DOCTOR WAS ON HIS WAY AND I DIDN’T WANT TO MAKE HIM WAIT! YOU MAY NOT REALISE THIS, BUT HAVING A BRAIN TUMOUR IS HIGHLY STRESSFUL AND I WANT TO CLEAR MY HEAD BY GOING FOR A STROLL.” It’s odd, but I actually felt like I was using the alien as an excuse for going for a stroll. How absurd is that? Didn’t feel like an explanation, it felt like an excuse. Like it wasn’t actually bothering me, but that I was using the fact that it could be.

OK, he’s been and gone. It’s 1.10 am on the 25th April 2010.

First up he wanted to know why he was there. He just got a message asking to come and see me. Hadn’t been filled in on the fact that I’d been waiting for 18 hours. I let him know. Of course the original plan in seeing the doctor had been to get discharged so I could go home, but by this time, that was completely out of the question. Care. He accepted unequivocally that it had been an unacceptable wait… and then said Monday. I nearly erupted. “Whatever work you have on Monday, it’s not worth dying for.” Fair point. Still, I asked him what I WAS being kept in for, and although he spoke quite a bit, he didn’t actually say anything. I’m here because I’m here, so I’ll be leaving tomorrow. Won’t be early, apparently. “One last thing Mr. Kahn.” “What’s that?” “Can I have permission to go for a walk?” Well with his approval, the ward nurses reluctantly let me write up a massively OTT statement discharging them of responsibility and let me go for a stroll. God I feel better. Bit of an adventure finding an exit (they’re all shut bar the main one) but it was good to be out and about. Saw some closed shops and a bar with music and fun heaving out of it. Thought about going in, but knew it wasn’t sensible. Just going past felt like some of it was rubbing off on my though, and walking back, I realised that wait or no wait, cock ups loosing my scans, general sleepiness of proceedures, whatever… I really am grateful to these people. They might not be getting flowers like the ones in the last hospital did, but I do appreciate what they’re doing for me. My antipathy, because I do have such, is to the silly system they’re using, and to the training which has left them ill prepared to deal with the intracacies of how to deal with people with brain tumours, who need to see doctors, NOT with them as individuals. Even the tit who told me that the doctor would DEFINITELY be round by six, which just happened to be when he knocked off, meaning I wouldn’t be bothering him asking about the doctor again… even he’s ok. Just a bit of a tosser. Just trying to get through the day with a minimum of grief, same as the rest of us.

I think I’m beginning to get the hang of the NHS. It’s not the same as any other institution, it’s intuitively interactive. Funny thing is they try and stop it being interactive, but it absolutely has to be. The hospital tries to process people as cases, diagnose, treat, discharge… but it’s absolutely dependant on its patients for feedback at every stage… if I hadn’t pushed and complained about not seeing a doctor, they wouldn’t be seeing me later this morning, and I could easily slip into being here another couple of days, have the scans get lost again… It’s clear I’m going to have to coach them through it at every stage. They need a bit of a shove to get them moving. Nothing necessarily wrong with that as long as they actually do what they need to, once shoved.

Had a minor bust up with Rachel earlier. Not good. She was sat on my bed and we were discussing release with Da. He asked when I was told I would be released on Saturday and I mentioned the phone call I got at the River Café on Thursday, when I came in. She tried to correct me. I said something stupid like “how the fuck would you know what got said in that phone call? You were in a different city.” Tears followed. Had to look after her. Am I trying to push her away? Is that what I want? I can’t figure it out. On the one hand, I love her. She loves me. I find her visiting me uplifting and happy and supportive. But on the other hand, I am going into something majorly, massively, massive. I don’t have the first idea what I’m going to get told on Wednesday. It will NOT be good, but it MIGHT be bad. It could be “dunno.” And probably will be. So how the hell am I meant to conduct a relationship. It’s suddenly stuck into stasis. I don’t want to be carrying Rachel in this. I don’t need that. BUT. I might, might be able to do it. I don’t want to, but it might be worth it. She will have to carry herself a lot too, if it’s going to work. One thing I am certain about is that I cannot, must not, keep a relationship with her going because it makes this thing easier for me. It must be because I want something else, namely her, whatever else. I think she can make her own mind up about whether she can handle being in a relationship with me given different projected life expectancies. I don’t think I should, morally, make that judgement for her, though I will if I need to because it becomes obvious that she’s just incapable of doing the right thing for her, because she’s incapable of being cruel to me. We’d both be gutted to see each other go, but if it’s what’s got to be, I am absolutely sure I would find new avenues of life (focusing on dealing with the alien better) exhilarating, and I hope she would to. She is in a massively disrupted stage of life at the moment, having got fired the same day I got diagnosed, and out of that can come either chaos and collapse, or rebirth. I hope and hope and hope that she’s going to find the latter. Long term I am quite sure it will be. The hopefulness in her “hello” when she answers the phone, has long been the thing which I think I like best about her. I haven’t heard it quite so loud recently, but it’s still there. She’s at heart an optimistic and trusting woman, who expects the world to be good and kind, because this is how she is. I think that she is probably right, and that it will be.

Wow, just tried word count. Over 11000. Had no idea. And all of it bollocks.

My hair is matted down with some thick yellow gloopy gluey shit. It’s completely plastered onto my scalp. And there’s a plaster stuck over the top of it. It’s hideous. With shaved bits. When I lift my eyebrows, I can here the operation site squeaking. That’s kinda funny. Probably ought to check it with the surgeon tomorrow, coz other people can hear it too.

At least this place is quieter than the last one on the whole. There was a guy called Ted in the bed next to me in the Princess Royal in Bromley, where I was for the week after my seizure… About 30 to 40 stone we reckoned. Seemed like a pleasant enough bloke, if boring… they told him that if he died, they’d have to send him to London Zoo to be cremated because there are no ovens big enough in normal crematoriums. If he needs an MRI, it’ll be at a racetrack. Using equipment designed for horses. Oops. He had sleep apnoea. Not all that surprising really. Made him snore like a bird singing really, really badly. “woowwowoowwwoooooowowowooowo” like a child pretending to be a ghost. There’s not much camaraderie in either hospital, nor, come to think of it, any other I’ve ever been in. I think that’s down to the disgusting décor as much as anything. If anyone could bring themselves to spend time in the day room, they might actually talk, but it’s like the wards, completely dismal. But with TV. Ant and bloody Dec, just what I need. Wonder if it’s any better in hospices, where I’d assume people’s inhibitions should drop off completely… or perhaps they don’t… in which case perhaps they should be encouraged to… I think I’ll be doing some research into hospices, they could be a wonderful place to work, potentially. Nightmarish too, but nothing’s ever easy that’s worth doing.

Later, 25th April 2010. Just had the day shift doctor come round. Fuck me. Exactly as requested, he told me I could go home today. Cool. As expected. Only a day late. When? I knew I needed a drugs program and an appointment with a consultant booked before I can escape, so I asked for these. “Ask the nurse about the drugs.” “Which nurse, can we ask her now?” This is one of the snippier, less helpful of the mangy team of layabouts behind the desk, I don’t like her anyway. “No discharge today, no transport on Sunday.” Thanks for that… “Private transport, I’m trying to arrange it now, I’ve got my dad on the phone, he’s collecting me, so can you just tell me when the drugs will be ready for me to take?” She looked at me like I’d told her I was going to be carried home in a sedan chair carried by slave children. “Three hours.” Yep, three hours to take a sheet of paper downstairs and carry it back up with a box of pills. No matter, I can handle this (not that it’ll happen on time). SO. “When will I see the consultant, and which will it be? Name I don’t recognise. Who? Not Mr. Bahngoo, or Ashkahn, or Kahn, or you or anyone else I have ever met? No? Oh well… and when will it be? FOUR TO SIX FUCKING WEEKS. It’s gone from being “definitely Wednesday” in every single comunication I’ve had with anyone, anyone at all, to a month and a half. Don’t know if it’s benign or malignant, don’t know toss. And they don’t want to tell me for six fucking weeks. By which time I could easily be dead.

Thanks doc.

Think it might be time to start looking into second opinions and private care… they’ve got the goddamn biopsy, if they can’t be arsed to look at it for a month and a half, I am in seriously dire straits, because it’ll be another decade or so before they decide to do anything about it, and by the time I actually get onto treatment… I’m beginning to think that they’ve taken Charles seriously and that they’re on the tumour’s side not mine. Oh well, they may have a point there…

It strikes me that Jesus was probably much less of a prick than everyone who’s used his name to sell stuff since he died. As I think F.M. Alexander put it, “nice enough bloke, but a rubbish methodology.” Or words to that effect. He who does not bare his cross, cannot, whatever it was… well I’ve got my cross and I’m enjoying it for now! If I get weak, and infirm and loose my mind, I won’t be in a position to deal with the frankly useless level of care I’m receiving… Anyway, you get to 30, find a calling, go a bit weird, get tortured to death by 33. It’s good to have a role model!

Grapes, grapes are good. But I prefer them fermented.

Why oh why do hospitals and other pikey B&Bs think it’s acceptable to call rehydrated fruit juice concentrate a “starter?” It’s not a starter, it’s German urine, and everyone knows it. Just because it comes in a plastic cup ahead of my plate of mush, it does NOT mean I’m getting a three course meal, which is what they’re clearly trying to con me into thinking. I’ve got a brain tumour, not learning difficulties! Oh well…

I’m back home. It’s good. I’m in a privileged position and I’m using it. Just talked to my uncle on the phone. The position I’m in is ridiculous, I’ve got a brain tumour, they could tell me all about it in two days and instead they’ve offered to tell me about it in a month and a half. Andrew’s going to phone them up tomorrow morning and sort it out. It’s great having family on the case.

I’m becoming aware that I am, in normal life, as much as now with a particular issue on the go, pulled in many directions. I’ve had Rachel here from picking her up on the way home to her leaving after supper, I’ve had Charles on the phone for an hour (drunk and brilliant), I’ve got my parents, with their quite different ways of dealing with everything… and I’m a different Ben, to an extent, with each of them. Is that odd or does everyone do that? Is that what Zen’s trying to level out? In part?

I need to contact some hospices. I want to contact the new one by Charing Cross Hospital, it’s called a Maggie’s Centre. I reckon that volunteering to volunteer there would be a good way of finding out what the range of existential stylee, non denominational, non religious, help, counselling or visiting, or whatever, there is for the terminally ill. I really reckon this is something helpful and good that I could do, and it’s only about 20 mins walk away. Could volunteer a couple of times a week without biting into my relatively un busy schedule without noticing the loss of time. If I’m shite at it, so what? I’ve had a shot… and might know more. Might even find it easier to deal with whatever happens to me when it happens to happen. And if I’m good at it? I’ve actually accomplished something, done something vaguely worth while… not normally my cup of tea! First up I need info, a lot more info. Google “palliative counciling” and fuck all comes up, nada. It’s all under “palliative care”, which is medical, or hospice chaplain areas, which are religious. So where the fuck is the person who ought to be there for a scared atheist who’s beyond medical help? There’s prison visitors, hospital visitors (Fernand, opposite, our lovely neighbour visits Charing Cross to help strangers get to the chapel to pray), but I don’t know if there are hospice visitors. I’d expect a basic level of instruction… wrong word, I mean advice, support, backup, from the hospice, but with that, I really think I could be of some help. Problem is, I have no idea how. I can’t imagine speaking to someone who was in exactly the same physical condition as me, but who was scared silly, and knowing how to get them to see the thing from my perspective. I think it’s just somewhere you are, or somewhere you ain’t. The only thing I can think of is Alexander Tech, and that’s slow, for the sort of change you need to see. Time will be of the essence with this crowd! Am I doing this for me or for the people I’ll be visiting, if I do it? And how far could I take it? Would I consider training? As what? Psychotherapist? I’m already doing one badly paid quasi therapy course, I think that’d have to wait a fairly long time… Ok, sleep time. I’ll email Maggie’s in the morning, if I can.

26th April, 2010. I thought steroids were meant to make you muscle bound and hunky? So why do the ones I’m on (Dexamethasone) just make me want to eat everything in sight? I mean seriously, I found myself earlier, wondering what the best way to cook the wardrobe would be. On reflection, I decided it would be best deep fried, like 99.9% of the things I’ve been thinking about eating… (I decided it might be considered inhumane to deep fry my own feet, so when I eat them, they’ll be roasted, and I might detach them first). Oh and it makes you snotty. Bleugh.

So why am I writing all this? Just preening? I am trying to just spit everything out onto the screen without thinking too much about it. Thinking as little as possible in fact, which is why the prose is such shite. Reason for this is simple, I want vulnerability. I want to reread it when I stick it up, and think “oh god, did I really write that? That’s so childish! So selfish! So stupid!”… We’re all so careful in what we communicate that I think it’s useful sometimes, just to get a direct squirt of what’s inside coming out, and I think it can be helpful to witness that too. So that’s what I’m aiming for. There’s a fairly good chance that people reading a lot of this will find me spoilt, stroppy and impatient. They’ll be right of course. But I’d rather that than have something well prepared and thereby separated from what’s going on with me. Bitching about nurses’ incompetence and dishonesty is what’s been occupying me for the last two days, so that’s what I’ve been tapping out. I hope the people I know will see past that, but will understand if not. I think that pretty much everyone has slightly irrational and cross reactions to being messed around, particularly when in a bit of a pinch anyway, and I don’t want to pretend I’m any different by rationalising out what’s going on with me and the NHS too carefully before I hit the keyboard, if there’s any point in this blog, which I rather doubt, it’s that it’ll hit a cord with someone, and that won’t happen if it ain’t pretty much set down as it goes.

Right, I’ve been given a date for a consultation: Friday. 3pm. That’s possibly when I find out whether I live or die. Cool, bring it on! Assuming, that is, that they can be arsed to get my biopsy results to the meeting…