Category Archives: Health matters

The longest stay

Hi everyone, I’m finally back writing in this blog; the delay hasn’t been due to brain activity (or lack thereof) following the operation, but… well, having little to say until now: I’ve been staying here at my family’s Worthing home for longer than I did in 2018, following my first bout of brain surgery, and indeed longer than any single period of time since I first went to London in 2003 — with no end date currently in sight!

However, even if Tier 4 lockdown hadn’t begun after I came down to Worthing for my folks (well, my mother) to take care of me during my recovery, I’d still be happy to stay here for the time being: it’s more consistently warm in this house than in the Victorian one back in London, I can take baths instead of showers, I (mostly) don’t need to cook for myself, and our weather’s a bit more moderate (due to being close to the sea) than in London, where it’s snowed!

Of course, there are always problems: I’m still having a lot of trouble sleeping, and although the dwindling supply of melatonin I was able to get prescribed has helped a little, bodily aches still either wake me up or keep me from ever falling asleep — and even ibuprofen (which I was nervous about, considering the depression it brought upon me in previous years) only prevents this for a time, if at all.

Perhaps this is why my plans to fill time productively while staying in my family home have all faltered: I’ve stopped practising the guitar (just when I was finally progressing through the Justin Guitar lessons I started seven years ago), I’ve barely managed to translate even one paragraph of a Japanese book (which I did a lot more between tasks when I was working from home), I haven’t written in this blog since the end of December… and worst of all, I’m barely even playing computer games now!

(My Kindle works still lets me read Stephen King at bedtime, though…)

All I seem to do is watch TV these days, and noting how little swearing is cut out of old evening comedies being broadcast in daytime on Gold: indeed, the only word I’m sure has been edited out is the one that starts with “B” and rhymes with “mastered” (Raquel to Del in Only Fools and Horses, a pre-watershed show), and not when it’s used in its original meaning of “illegitimate child” (Samuel Johnson in Blackadder the Third, a post-watershed show).

Other than this, they’ve kept in the other mild B-words (Del in Only Fools and Horses), a five-letter P-word used to describe a cat with even greater innuendo today than back then (Mrs. Slocum in Are You Being Served?), a three-letter S-word (where Baldrick’s first name came from in Blackadder the Third), and (especially in Blackadder Goes Forth), amazingly, both of the four-letter words (one dirty, one sexual) that start “sh–“!

The F-word is absent, because it wasn’t even used in post-watershed shows at the time (and indeed edited out of films, resulting in complaints about the Beeb showing The Terminator late at night in 1991) — but one type of thing that doesn’t seem to get edited out, are references to Jimmy Saville (Del promoting Uncle Albert in Only Fools and Horses) and Gary Glitter (Miss Brahms in a Christmas episode of Are You Being Served?).

(As a side note, Are You Being Served? inspired me to go to the trouble of adding another notification sound effect to my phone: “I’m free!”)

At least I’m saving money, my workplace happy to pay me during sick leave (it’s payday tomorrow!), and allowing me to take additional time off to recover before I return to work, putting me on furlough in the meantime.  I may not be in London, but I’m still able to handle bills for that shared household; three of my housemates are fine with it (I’m having the usual argument with “worst housemate”, who doesn’t think we should pay bills when we’re not in the house) — but as for the actual transference of funds, well, therein lie a couple of tales…

  • E.ON (who have been named and shamed many times in this blog) somehow took their £100 monthly DND from my bank account on Christmas Eve, instead of the day it was actually arranged for (and did this to other customers too), leaving me overdrawn as it’s an old account I only use for getting my housemates’ bill amounts together; the bank helped me more than the electricity company, who then “repaid” £100 that they hadn’t been able to take in the first place (due to my bank cancelling the event), and I had to arrange to pay that back to them!
  • When “ambivalent housemate” paid me his share for January, Barclays Bank somehow managed to reactivate an old standing order of his, which automatically paid me the old, much larger monthly amount in addition to his intended payment, and so I had to pay him back via my normal bank account (due to the difficulty of setting up a new recipient on the old bank account) — so for the second time, I had to be honest and not keep the accidental payment for myself!
  • And then there’s Barnet council, who I needed to call today to make sure we’re still paying council tax to the end of the 2020-2021 financial year (as I didn’t bring my set of bills with me to Worthing, only my folder of surgery letters), but their main number directs me to an engaged line — and that’s only if I call via landline, as my mobile gets cut off instantly!  I’ve thus had to assume it is indeed the same through to March, just in case.

But what of the people in my life?  Well, my poor mother’s overstressed looking after both me and her mother, and while I’ve recovered enough to help out a little, my grandmother has deteriorated over the recent months, to the point where (despite her defiance) she needs to go around the house in a wheelchair, to avoid the danger of her falling and hurting herself.  She can’t do any housework beyond drying the washing-up (from a seated position), and she barely seems herself any more — but at least we’ve been able to get her vaccinated, so she’s got a better chance of survival.

(The dog’s okay, and just needs attention, treats and walks — all of which I can do!)

At least none of us are suffering indirectly due to the pandemic: my mother’s not worked for years, taking care of my grandmother full-time (and receiving a pitiful welfare grant for it), and is close to her (unfortunately five-year advanced) retirement age, while my grandmother hasn’t been able to go anywhere over the past few years (lately not even to the supermarket with my mother) due to her health situation, so their lives have remained unchanged, and I empathise with them (in my current situation), the only real difference between weekdays and weekends being what’s on TV.

I myself don’t much like going outside except to exercise, and throughout the lockdown have been happy having my personal trainer torture me online via Zoom —  and now that my “six to eight weeks” limit on exercise has come to an end, and his own health situation seems to be under control, we should be able to resume.  I’ve always hated loud, crowded places such as pubs and offices, and I never go to football grounds (or other sporting events), so you can understand I’m happier in a quieter world — and I certainly have no sympathy or respect whatsoever for party animals creating chaos on housing estates, spreading the disease as well as making a hell of a noise and risking destruction of property!

I’ll never truly miss commuting every morning on a packed London Underground train (even sitting next to “manspreaders” and politely but firmly nudging their legs back across the seat divides gets dull after a while), though I would be delighted to do so once in a while, acting as “boots on the ground” in the workplace for the sake of the team.  The only other places I’ve used it to travel to, apart from work, hospital and Victoria (when going to Worthing), were the Castle climbing centre, my personal trainer’s gym, and Trafalgar Square to meet the “helping the homeless” organiser, and I can’t do any of these from here anyway.

I won’t need it to travel to salsa classes or to meet “first dates” any more: as you know, there is one special person in my life… and she lives in a Far Eastern island nation (not Japan) which appears to be the only country in the entire world to get a grip on the virus and keep it down to virtually zero — so I wish I could meet her again face-to-face, either me visiting her in the safe region she lives, or her visiting me without bringing a virus to this nation (or catching ours).  But that’ll take time, due to the international lockdown and quarantine (currently three weeks for me visiting her, or her returning home from visiting me), so we must continue to chat online, textually or through Skype, and hope for the future.

(She’s making sure I live long enough, by sending me medical supplies that might enable me to travel safely back to London some day!)

As for living here in Ferring medium-term: obviously I’d rather have a truly private room, but my mother keeps her visits to this room to a minimum (mini-mum?  No?), and I’ve rotated things so I have the space for an armchair in front of this contraption, as this small computer chair may be behind my aches and pains to some extent, and nowhere near as comfortable as the “gamer’s chair” I got for my birthday in 2019, to use in front of my non-Windows 10 supercomputer (by chance, also useful in 2020 when working from home!) — and the low “tray table” I’ve used for the keyboard here since 2018 hasn’t helped either, especially the crossbar at foot level.

So, apart from my room (when it’s not cold), my supercomputer, my desk and my gamer’s chair, the only thing I miss about my London home is… er… my physical CD collection, as I’ve been systematically re-ripping them in .ogg format (I hate having to use Windows’ lousy .wma format on my phone, as it clicks between tracks), and want to listen just to those superior-format albums in bed at night, as a sleep aid (missing most of the tracks is a good sign!).

On which topic: I’ve gotten some new CDs recently (mail order is still working), and one of them… well, guess who remastered their 1990 album, the first of theirs I ever heard…?

— — —

P.S. Just be thankful I didn’t get all political this time… I’ve saved the text I cut out, so maybe I’ll have the basis of another blog post soon, just to get things off my mind?  Regarding the sort of people who call themselves “Proud Boys” or “QAnon”…?

Worst year ever?

I’ve been here in my family home in Worthing for a few weeks, recovering from the operation I had in late November, thanks to “best mate” driving here before he departed for his homeland for Christmas, but it’s not a happy process, and I feel like I’m going to have a lot of trouble recovering psychologically, even if physically I’m doing relatively well.

Firstly, nothing’s improved for my grandmother since November: she’s deteriorated to the point that she can’t do anything for herself, and can’t help around the house (which she could do to some extent until this year), which means my mother has to transport her around the house in a wheelchair.  I’ve tried to help with this, and to say hello to her when she’s sitting alone in front of the TV while my mother’s elsewhere, but she really doesn’t seem to be herself any more.

I also love my poor mother, and wish I could help her, but even simple things like doing the washing-up have required knowledge (in terms of where to put things away in a kitchen I’ve almost never used over the past 17 years), and I worry about letting her down.  I’m careful in terms of exercise, due to how little time has passed, but I want to reduce her stress so she can live her own life as well.

I even feel a certain shameful wish that my grandmother would pass away peacefully in her sleep, so we can finally say goodbye… but that would be inappropriate — she’s my grandmother and I still love her.  However, I’ve long known it would be unendurable if my mother died and I somehow had to look after my grandmother alone, something I don’t know how to do — so, barring my grandmother somehow reducing in age to 60 (when I was 12!), the first option is the only realistic one.

(At least the dog’s happy with us all, even if she seldom shows any interest in the new toys we get her!)

The situation is complicated by the fact that (unlike in 2018, or literally any other Christmas) I can’t use my own room in this house, as my grandmother needs to be there due to it being directly opposite the bathroom.  My mother wants me to sleep in her bed, and has let me set up this Frankencomputer in here, but her own PC also sits in here due to there being no room in the lounge, where she sleeps on an inflatable mattress — because the little room where my grandmother used to sleep when I visited is too full of old relics to be useable for anything except storage.

And I can’t seem to sleep anyway, either dropping off briefly and then lying awake for hours, or not dropping off and lying awake for more hours.  The neuro-quacks reckon it’s normal and can be treated, the man I spoke to a week ago saying they can prescribe me melatonin so I drop off, but really, I find myself wondering whether it’s more down to my brain overworking pretty much all the time.  The new “Tier 4” lockdown had come the day after they’d made my meeting with them face-to-face instead of over the phone, but fortunately they were able to do it online (though unfortunately through MS Teams).

No, not coming up with amazing new theories or inventions, but just skittering around — worse than last time, when they said concentration would be harder — and on political issues, largely thanks to the COVID-19 pandemic and lockdown.  Remember my rant last year, about how “the left” and “the right” should try working together instead of insulting each other to score political points?  I still feel the same way, and I still find I disagree absolutely with self-styled “right-wingers” on (serious business!) Facebook.

However, the worst part is imagining, uncontrollably, that I’m having a conversation about it — and with someone who I don’t think has ever liked me.  My old ex-RAF school friend and my old ex-military American friend are both unequivocally right-wing (whatever that means any more), and have linked to far-right Facebook groups that I’ve immediately blocked, but they’ve been supportive in my surgery and recovery, and I thank them for that (well, at the same time as thanking everyone else, I’m not biased).

I still can’t believe I forgot to mention “The Princess Bride” in that original image caption — inconceivable!!!

The one who troubles me is the young man whom “female best friend” married in 2013, who is both religious and libertarian, and who is clearly a right-winger in his own terms, linking to what are unequivocally right-wing self-superior nastiness groups; thus I’ve put him on timeout on more than one occasion, so I don’t try and post a response, making things worse.

It sucks feeling like I’m stuck in a waking dream about trying to discuss the opposite point of view with someone I’ve almost never spoken to anyway (to be fair, he once posted an article on my wall about the untimely death of Dave Brockie from Gwar) — but fortunately, after writing this section last night (originally a hell of a lot more, indeed!), I was actually able to lie peacefully and not keep thinking at ten words a second, so forget him.

(Here’s hoping I didn’t jinx things by keeping this section in tonight…)

Thus, my sleeplessness seems to be medical in origin after all, and in no small part (uh huh huh huh) due to my right leg hurting a great deal, possibly due to how I’m sitting here right now, writing this blog post tomorrow evening.  I’m not supposed to take any other exercise than walking until at least the six-week mark, but my personal trainer’s agreed to do a very basic online session on New Year’s Day, and we’ll see if that helps to get my blood flowing again — personal torture has certainly evened out my aching limbs in the past!

One thing that doesn’t help is the dismal weather, as it means I can’t take the dog walkies… it’s either raining or very, very cold, and she refuses to walk to the park, which means I have to carry her there!

— — —

These events round off a year that I’ve loathed all the way through, even leaving aside the pandemic — from feeling like a clumsy idiot at work in February and March, overworking trying my best to set up laptops for homeworkers in our organisation during the lockdown, and only making myself feel worse by telling senpai that my memory may be affected by the medication after dosage was increased by my neuro-quack — a need to return to the chiropractor to deal with pain only adding to the misery.

I felt bad in April too as I homeworked and made mistakes, only being even remotely happy during the Easter break, but although things improved in May, more so in June, and amazingly so in July, it was then that two bad things happened: our organisation suffered a major breach (with senpai and “Asian Eddie Hitler” being grateful for my hard work), and the aforementioned neuro-quack told me that the “space invader” had renewed its attack, and so I’d need further work done.

I faced up to the need and vowed to get through for the sakes of others, and after a long wait, my operation went ahead and was successful — but as above, I’m still psychologically suffering, my grandmother is helpless, and my mother is overburdened with responsibility to both of us.

I wonder if we’ll even stay awake on New Year’s Eve (though in my case, I won’t exactly be sleeping when the fireworks go off at midnight), as next year’s likely to be even worse, what with Coronavirus II prolonging lockdowns and killing more, Brexit being put in place without any real competence, more online hatred of “SJW libtard snowflakes” (from the sort of people who make me think that the “SJWs” might actually have a point), and the sort of attitude that suggests anyone who dies from the disease is well rid of.

But some good things have come out of the lockdown this year: as well as staying full-time employed and thus coming to prefer homeworking (avoiding the daily commute is its own reward, and saving Oyster money is a bonus), I’ve been saving enough money to massively upgrade my London PC (and learn how Linux is better than Windows), the times we’ve spent apart have made me appreciate seeing my family more when I’ve had the chance… and a certain young lady and I spent a long time writing to each other before we finally met in person at what is now, for both of us, alma mater.

Even the worst times can lead you to the best things: I’ve been trying to find someone special since I was 18, and apart from a brief fling in Michigan, it was only in 2013 (during the lifetime of this blog) that I was finally able to go on actual dates, in no small part due to the young ladies asking me out, but nothing good came of it for a long time… and this year, suddenly I found someone new through a dating app, and have since spent more time with her over the Internet than I ever did in the real world with my other dates — all of them, collectively throughout my life!

I really hope that 2021 actually turns out to be an improvement on this year (rather than another case of “interesting times”), and that not only do things get sorted out for my family in a positive way, perhaps involving us leaving Worthing forever (and maybe adopting a second dog?), but that I’m able to meet my special someone in person at last, without worrying about pandemics (of either disease or, worse, nationalism), and we can spend time together in the real world… or have I said that before?

— — —

P.S. One thing that would be bad in any other year, but was merely annoying this year, was our useless energy company in London, E.ON, messing up my monthly Direct Debit payment and taking it on Christmas Eve, two weeks ahead of the scheduled time — and they did this to a lot of other customers as well!  I was able to convince my bank (the one responsible for my old account, which I use solely for household bills now) to cancel the payment the same day, but the leccy company will finally sort out their side of it… tomorrow!

This time, at winter

I’m alive and gradually recovering after Brain Surgery, Round 2; I almost wrote this last week on the old laptop I brought with me into hospital, but somehow only now am I feeling inexhausted enough to write something vaguely intelligible… well, that and I’m using a keyboard that doesn’t keep ignoring me pressing the space bar, and which doesn’t have a touchpad right underneath it.  I’m able to write on my home PC because they let me out early, on Friday last week instead of Monday (i.e. today) this week, so clearly I got through the aftermath better than expected.

(Or, I was an awful guest and they just wanted me to hurry up and clear out?)

What happened this time in comparison to 2018?  Well, as hinted here ahead of time, they only kept me asleep at the very start and end of the operation itself — and this time, rather than a jump cut, I felt myself falling alseep and waking up gradually at each stage.  I was barely able to stay awake during the actual ordeal, as two nurses tested me on my English knowledge while my brain’s unwelcome visitor was hacked away by surgeons out of sight, though in the event I needed them to read out sentences to me (so I could say whether or not they made sense), as (a) the plastic covering kept getting in the way, and (b) I didn’t have my glasses on!

It took a long time, but fortunately I remember only bits and pieces, which is probably just as well to avoid feeling like I was spending eternity in the deepest pit of Hell (boredom being far worse than anything Satan could come up with).  Every time I asked, the time left had gone down significantly (several hours, a couple of hours, an hour, half an hour…).  This was probably the first time I’ve ever been able to lie in an active MRI scanner without needing to move, most likely because I was on my side instead of my back!

My mother told me the information she was given in the aftermath: the surgeons took out 99% of the “space invader” (new and old), and then, presumably when I was back asleep, went back in again for the lingering 1%, so now — for the first time in, almost certainly, decades, and hopefully for a long time in the future — I’m rid of the cursed cerebral corruption, and just have to suffer through the same post-op symptoms as in 2018… except this time in winter, and with my family having more than just me to look after.

At least my mum’s managed to secure help looking after my grandmother, who thus has a little longer in the world — but I wish I could get over these symptoms quickly, and help her (even if it’s just keeping the dog distracted at important times).  My head aches, naturally, and I get throbbing from standing up and walking, but I also sometimes “see” things more distantly through my left eye, my right-side hearing may be crackling again (unless it’s just my TV developing bad sound quality?), coughs and sneezes (allergic rather than viral) cause instantaneous headaches, and after one good night’s sleep on Fri-Sat, I’m back to lying awake in the small hours…

(On the plus side, issues with both intake and output of the digestive variety seem to have been resolved over time, even if my diet has made no actual improvement!)

Hopefully I won’t jinx anything, but I’m pleased to announce that the right side of my body seems to be in full working order: I can mouse around in FPS games (Halo 4 seems to be working fine), and… er… well, I can use it in things where I also use my left hand, e.g. typing this out on a keyboard two-handed instead of one-handed.  The important thing is that I seem to have finally overcome the mini-strokes I was getting before!

Walking around isn’t pleasant — along the street, downstairs and upstairs in this house — thanks to the head throbs, but I don’t want to just sit here in front of my computer… wait, did I actually write that?  Of course I’d love to sit here playing games and surfing that newfangled Inter-thingy, but I have to stretch my legs and pop down to the shop occasionally for supplies (though I should have enough now for a couple of days) — and walking aside, I need to lie down occasionally and rest in here, rather than stare at screens all the time and risk hurting my eyes.

(Staring at my Kindle’s screen doesn’t matter, as it’s not luminous — and in any case, it’s Stephen King!)

Due to the nature of my left-side head suture this time around, I can’t just wait for temporary stitches to come out of their own accord, and 14 days after the operation (suddenly extended from eight days), I’ll need some quack to do it for me, using a blade like the one they gave me at the hospital.  My own “GP” here in Finchley won’t even consider helping, and so I’d have to arrange something with a nearby hospital for next Monday… though my mum may have worked a miracle by getting her non-scare-quoted GP down in Ferring to let me be a temporary patient there!

That’s a good sign: I’ll be allowed to travel down next weekend to convalesce, like in 2018, in the town I’d so longed to escape from, and someone will take care of that particular stage for me, which will mean that — at last! — I can get the rest of my hair cut short, and start washing it again, the last time having been the morning before my operation (and using a lousy red fluid that didn’t exactly bring out the shine).

It was great being able to relax in the warm summer back in 2018, but this time around, it’s in an increasingly-cold winter, with the house only slightly easier to heat now than it was six years ago, when I felt a lot less optimistic than now — but once again, it’s only until I can visit my “support bubble” on the south coast, and start Christmas even earlier than I did in 2014, and with more optimism.  I won’t be cold living with my mother, grandmother and dog, and I’ll be in no hurry to come back here…

— — —

Apart from my mother, I’m sure you can guess that there are two other valuable people whose support has helped me keep going through what would otherwise have been a terrifying experience: “best mate” drove me to and from the hospital, not to mention fetching stuff from shops for me, and I owe him big (letting him borrow my printer for a big project is the least I can do); and there’s someone… precious to me, still living eight hours in the future, who makes me want to find the strength to travel abroad again (which I’ll be more confident doing once symptoms and medication are under control) to meet her face-to-face.

(Would I have to face two weeks’ quarantine, like she did when she went home earlier this year?!)

I’m grateful to my medical assistants, supportive Facebook friends, work colleagues (I have to keep texting three at once just to satiate them) and, of course, my personal trainer (he’ll have to wait a couple of months before he can even risk torturing me again!), but the above three are the most important in my life in this situation, and that’s all that matters to me right now.

Perhaps this is why my closing questionnaire at hospital led to me being found non-depressed — I’ve got too many reasons to live — and only anxious regarding possibly-required medical treatment in future, not human interaction at present.  We’ll have to see what returns of its own accord inside my brain, won’t we?

Matters coming to a head

(Phew, I found the classic editor again, so I can actually see the box where I’m editing text — I really should have used a different blog site in 2012, shouldn’t I?

Surgery will be like this, except lying down and having my mouth moistened so I can answer the questions they yell at me — and if I’m lucky, an even short back and sides

It’s all happening to me at once right now: at the same time I’ve finally got surgery organised and prepared (I’m checking into hospital next Sunday, for an ordeal that will take place on Doctor Who‘s 57th anniversary), I’m almost certainly going to lose a precious relative, someone who’s been part of my life literally as long as I can remember — and in a far more inevitable, unstoppable way than when I lost other close relatives in 1984 and 1999, as this time it’s a long decline instead of an unexpected event.

Knowing what lies ahead of me doesn’t help: I’ve been through some preliminary checks and discussions (I was worried the main event wasn’t going to be scheduled until 2021!), but I’ve got to be tested for coronavirus on Wednesday, to make sure I don’t bring it into the hospital.  It’d be bad enough doing this as a carrier, but since my operation will involve me being held in place with the left side of my head upwards while they cut stuff out, having an uncontrollable cough would be rather detrimental to proceedings!

If I pass, and the operation goes ahead as planned, I’ll have to self-isolate for the intervening four days (I’ve already begun stocking the fridge) before check-in, and use a special concoction for washing (including my head on alternate days), to ensure I’m fully disinfected.  I’ll also need to bring my latest batch of anti-epilepsy medication (I feel damn lucky that I was able to get my quack and the chemist to work together when I’d ordered the repeat prescription a week earlier).

Assuming all goes well (and yes, this is the least negative outcome), I’ll then spend at least a week in hospital recovering and being psychologically evaluated, to make sure I’m not getting anxious and depressed due to (a) the anti-inflammatory drugs they’ll have me on or (b) losing the ability to remember my extensive vocabulary and take in new information.  By chance, I should be able to leave hospital around the time that Lockdown 2.0 ends, and can spend a little time here before returning to Worthing to stay with my folks…

Or, as is sadly becoming possible, folk: my grandmother’s needed 24/7 care for several years now, but her condition has exponentially increased over the past months.  I found it worrying that she couldn’t remember my 40-year nickname for her when she wrote a birthday card for me in October — especially since my earliest clear memory is her trying to get me to call her “Nanny” but me only being able to say “Tatty” — but now she can’t sleep, eat or control her body, and has needed medical treatment in the middle of the night, asking when her husband would be coming home from work.

I really hate this situation: not only will I face losing her, but so will my mother — and at precisely the same time that her son will need care.  Whereas during my post-op period in 2018 my grandmother needed less observation and could still cook (including for “best mate” when he came to drive me back to London), this time my mother will have two people to worry about at once.  This makes me feel like a burden, much like my workmates trying to make it clear that I’m doing fine and they’ll keep things going in my absence, even after all we’ve been through since the end of July — it’s like I’m just creating more work for others, and can’t help them in return.

(The saddest thing: if my Wednesday COVID test shows I’m a carrier, my operation will get put back a month — but even then, I won’t be able to visit Worthing in the interim and help my family, and would have to stay here anyway, feeling helpless!)

If all goes well, she’ll have weeks to jump on my bed at 8am every morning

It doesn’t help that the darling dog we’ve had for only a year is seriously confused by what’s happening to one of her loved ones (I even heard her barking in the background of a phone call, because my grandmother had fallen over), but me staying down there for a month or two may mitigate this somewhat: apart from anything else, my need to take exercise as part of my recovery will mean taking her walkies.  She’s the newest member of the family, and I’d hate to lose her as well — and she makes my mother happy, which is the most important thing.

Like I said seven years ago, losing a home relative feels so bad because it’s like the place is emptier than before, and somehow you expect them to turn up again, it all having been a prank or a misunderstanding.  However, I’d rather face this pain and misery all over again, than disappear into oblivion and not think anything ever again — apart from the fear of ceasing to exist at all (hence I can never embrace atheism), I don’t want my own mother to suffer even more than she already is, and to do so alone.

However, I’m determined to get through all this once again (and hopefully improving a lot more than last time), as I want my mother, my friends, my workplace, and everyone else I know and love/like/tolerate/endure to be relieved.  They’ve supported me, but I want to resume giving to them, even if (for now) it’s exclusively online, and thus I can’t climb with “best mate”, box with my personal trainer, help the meetup guy hand out supplies to the homeless, or give a big hug to a certain special lady in the Far East.

(On the other hand, I don’t miss being in a noisy, crowded office, and I certainly don’t miss being lucky even to get a seat on the Northern Line — I’m definitely happier homeworking!)

A few coincidences concerning this situation: not only will my operation be, as above, on a certain anniversary (albeit not a nice round number of years like in 2013), but next Sunday will end the 43rd week of unbroken Wii Fit Plus sessions I’ve done since early this year (when I forgot to bring the save file home with me to Worthing).  I think it’s also, by coincidence, the final day of my most recent promise of weight loss in that same software…

Sometimes I wish it was happening on the 19th instead, but hey, there’ll be a successful operation if ka wills it!

Reasons to live through

Sorry I didn’t write throughout September — and just as I come back to WordPress, suddenly they’ve completely changed the look (to the point of not even having boxes around the text you’re editing, so this is in a big white expanse)!  Ah, wait: there’s the “classic” editor, I can write this again (protip: go to the draft in the “all posts” list, and choose to edit it that way) — and yes, assuming I get through what’s coming with sufficient wit, vocabulary, motor skills, and password recall, I’ll be posting here more after the operation as well, whenever that’s going to take place.

No firm date on “Round 2” of my anti-tumour brain surgery, but I’m caught between wanting to get it over with, and not looking forward to (at best) losing intelligence, getting frustrated trying to remember words (more than last time) and needing time off before I can work again, and probably before I can exercise again, or even learn new things out of books without reading and rereading them!

(At worst, of course, I would lose control of my right side permanently, and have no way to say or do anything at all — even death sounds preferable, with my mother as next of kin getting my money!)

It’s going to suck, no matter what happens, and sometimes I wish I could go back in time and make one change, to stop this thing from starting to grow in the left side of my head — but what could it have been?  Though it’s impossible it could have only begun growing in the past few years, there are periods in my life that could have at least enhanced growth, before my first definite symptoms at the end of May 2015:

  • Getting my first wireless signal booster for my room in early 2015, having lived in houses with Wi-Fi signals since early 2005, and first using a mobile phone (always holding it to the left side of my head) in mid-2004;
  • Doing that horrible, shift-based job in late 2014 — coincidentally just as the Beeb reported that night shifts had been associated with brain difficulties;
  • Weight training with my personal trainer from 2013 onwards, which very much increased blood flow to my brain (especially “deadlifts” a couple of weeks before the first definite symptoms, complete with a headrush);
  • Travelling by plane, above the atmosphere and exposed to cosmic rays, many times over my adult years — 2014 (Michigan), 2013 (California), 2008 (Turkey), 2007, 2006, 2003, 2001 (all Michigan), 1999 (Greek Cyprus), 1998-9 (Michigan, but eight months apart), and 1997 (southern Spain), the one in 2017 (er, Michigan) being after the symptoms began, and my last time in a plane having been 1990 (Florida) as a child;
  • As a combination of the two above, jet lag (especially in 2007 when one of my housemates had some unrepentantly noisy friends visiting at night time), and being kept awake overnight in general (especially at university, and especially during my freshman year);
  • The shock of finally kissing a girl at nearly 21 in late 1998 (as per the above, after a plane journey) — I certainly recall, as I made out with her for the first time, a subtle voice in my head, urging me to “make the most” as it might be my only chance;
  • Discovering energy drinks in 1997 at university, but really hitting them from 2008 onwards thanks to being on holiday (as per the above, in Turkey) with my friends, and only really giving up upon discovering where taurine comes from — and now there’s a vegan energy drink (caffeine-rich), which I really shouldn’t enjoy;
  • Learning Japanese from 2008, or indeed from 2005 before I started night classes (remember that the damn thing’s growing in the language part of my brain), thus explaining why I hate dubs and dumbed-down subtitles;
  • The Sun shining on my head (indeed, the left side) during a long bus ride up to Enfield from Wood Green with my housemates in 2006, which left me feeling dizzy from what may or may not have been heatstroke;
  • Head activities in 1993 (surgery in the roof of my mouth) and 2010 (my ear passages swelling shut from scraping them too much for wax).

“I vill terminate ze toomah… trust me!”

The neuro-quacks reckon it’s none of the above, and just a mutation that was somewhat inevitable — but I can’t help wondering about when it really started, as symptoms such as depression and anxiety have been affecting me for a long time, so maybe my misery late 2011 wasn’t an early symptom of this specifically, but more general, and the result of circumstance rather than entirely spontaneous.  Similarly, in late 1992 (as I wrote my diary about my first school term in Worthing), my life felt so worthless that I wished I was dead… could it be some kind of self-curse?

There have been other symptoms over the years: why did I suddenly need glasses in my first year at university?  A couple of years ago, a helper in a certain optician franchise (should I go to them?) said that it’s very unusual, and that most speccies need the extra pair of eyes either very young or very old.  Could it be that I was already coming down with something at that stage?  Any relation to how I used to get patterns in my eyes if I pushed them in gently?

Around 2008 I also started experiencing very brief patterns of lights in front of my eyes (noticeable due to how dark our front lobby at Caledonian Road was), and while that’s almost entirely absent now, and could well have been the result of stress (I didn’t exactly like my job at the time, working in Camden Town Hall Extension), it led to me being advised at the time (albeit online in a web forum) to get scanned.  Ah, if only… or would that have given me a false sense of security, if the damn thing hadn’t even started forming at that stage?

How about on a bus home from school in Worthing in the early 1990s, when Star Trek: TNG was on Sky One every evening, and I thought about it but suddenly couldn’t remember Whoopi Goldberg’s name (until I thought about it later and it came to me immediately)?  I had problems like that after my 2018 surgery (e.g. having to look up Star Trek: First Contact on Wikipedia to remember James Cromwell’s name).

“Boss lady” at work said that this kind of thing happens to us all as we get older, and others say they often have words and names on the tip of the tongue; however, it’s most certainly something I don’t want to face, whether due to age or surgery, as I’ve always been happy about my memory working so amazingly well, and my vocabulary rising above f***ing casual f***ing swearing.

— — —

Whatever happens, once again I’m determined to go on living — but why?  Well, some things are obvious: I’ve got a good and well-paid job (which I’ve been able to do from home during the lockdown), my mother and grandmother’s love and support have been there for decades (I want to ensure I can look after them when the time comes too), and people like my personal trainer and dating coach still support me in terms of physical and mental health — and, of course, “best mate” is here at least a little longer — but there are new things in my life as well:

  • The latest incarnation of my ever-improving PC (thanks to being able to work from home and save money) means I could play Doom Eternal in hi-res without slowdown, and can achieve so much more than before;
  • On that topic, there’s a new sequel to Amnesia about to come out on the 20th, so I can finally play a new scary game with the lights out (with my operation hopefully being less intimidating);
  • A new album by one of my favourite bands, Gorillaz, is coming out on the 23rd, and of course I want to hear it while not in a coma (or a coffin), especially with Elton John making a guest appearance;
  • I’m trying out the guitar again (I can just about play “Should I Stay or Should I Go?” by The Clash), and if all goes well and I retain the use of my hands, I’ve pledged to get an electric one at long last (obviously not a stupidly expensive one that goes up to eleven!);
  • I’ve still got quite a few Stephen King novels to read, and hopefully I’ll be able to take them in well enough that the neuro-quacks insist on studying me for science (note that my next phone call with them will be on the 19th day of the month);
  • I have every intention of reading other things, such as (properly this time) Judge Dredd, and something else I’ve heard of, a 21st-century reboot of the old Transformers comics (yes, I have no intention of stopping being a manchild);
  • Somehow I’ll find a new place to live, and leave behind Finchley forever (much as I hope my family can escape Worthing once and for all);
  • Both senpai and “Asian Eddie Hitler” want me to learn new IT skills, to help restore my intelligence and also earn me a higher post at work, so they can get some new Helpdesk muggins to deal with the peasantry needing to turn their computers off and on again (though the post-op learning issue would come into play there).

Most of all, though, my relationships: as well as wanting my folks to be able to stop worrying about my brain, and nurse me back to health so I can live again, and as well as Best Dog in the World 2.0 (who misses me so much that she barks at other blokes who aren’t me), there is my special one in the Far East, who I truly hope to meet in person again — maybe at last we can hug for more than a brief, lockdown-lawbreaking moment, and go for a long walk together, talking directly to each other instead of over the Internet…?

Needless to say, I’ve got another one of those bold and underlined, all-caps centred statements about determination:

DAVE-ROS WILL LIVE, EVEN IF HE DON’T WRITE PROPER ENGLISH ANY MORE, INNIT!

Light in the darkness

Lisa: Look on the bright side, Dad — did you know that the Chinese use the same word for “crisis” as they do for “opportunity”?
Homer: Yes — crisitunity!
—The Simpsons (S6E011, “Fear of Flying”)

At which point God vanished in a puff of logic

Almost immediately after I wrote my last blog post, something happened at work: I won’t go into details (partly for legal reasons), but suffice to say, we’re one of the organisations that was recently hit by ransomware.  It’s almost as though me buying such expensive computer equipment had harmed my karma (or ka), and I was being punished with a terrifying situation.

But don’t panic!  Somehow I’ve done (more or less) everything right at work to help out, and not only senpai and “Asian Eddie Hitler”, but “boss lady” herself have been thankful for my efforts!  I even went into the office to help the former two one weekend, and have gone in alone on several other days, to make sure PCs with special software are (a) virus-free and (b) remote-onto-able by critical staff, while other people can remote onto virtual machines just to have access to internal files and databases.

I should certainly get paid for my overtime, but it’s been said that the guys are working on arranging a pay rise for me — and the only disadvantage I have in financial terms is that I can’t defer my Stupid Loans repayments another year, which should be resolved by the pay rise itself (so that I’m earning more over the monthly gross limit than the amount I’ve got to pay back monthly).

Leave has been hard to come by lately, due to both the homeworking nature of my job and the lockdown itself; however, having plenty of leave left might prove to be fortuitous, as I’m likely to need some time off work within the next month or so, according to a phone call I received at the height of getting things working again, but oddly, a whole month after my last MRI scan, ending my belief that no news was good news…

As long as I don’t end up speaking in a monotone…

Yes, it’s another issue involving the “space invader”, which has begun rallying its forces for a renewed offensive — and while, for now, it’s only conquering the equivalent of No-Man’s-Land (i.e. growing into the cavity left by the previous surgery), it’s necessary to take action now, before it’s too late.

But don’t panic!  It’s not going to kill me any time soon, and produces no additional symptoms — and most importantly, this situation offers a prospective improvement on the treatment I received in May 2018.

I’ll be having a phone conversation tomorrow to get the full story, but it seems that, far from putting me under general anaesthetic to cut my noggin open again, leaving me to convalesce for weeks or even months afterwards, they can do something much quicker, using only local anaesthetic, which might mean only a day in hospital and a week of recovery.

It won’t be the cranial screw-top technique discovered by Dr. Hfuhruhurr in The Man with Two Brains, but it will involve another hole-in-the head; the main difference this time is that they’ll keep me awake while they test bits of the tumour-ridden segment of my left temporal lobe, freezing them one by one and checking that I can still speak and understand English before deciding on removing that bit.  It’s said to have been improving over the past two years, and so, rather than a guinea pig, I’ll be a straightforward recipient of a tried and tested process.

 (But now I wonder: is there a risk of me losing my Japanese knowledge?  Should I ask them to say the word oniisan and hold up a card saying a big brother character’s name, to check whether I still hate dumbed-down subtitles?)

And finally, there’s the really bad news: “best mate”, who I’ve known since late 2012, and who has been a housemate since Easter 2015, is planning to move back to his homeland, the Emerald Isle itself, with the prospect of getting his own house (and, technically, returning to the EU).  I’ll miss him, and since I’m not fond of the other three housemates, I feel like I should move out of this house once and for all.

I’ve lived here (in terms of actually being physically within these four walls instead of just visiting occasionally) for longer than any other house in my life, and indeed longer than all my previous London residences combined.  It’s coming up to 17 years that I’ve lived in the Smoke, which is… er… more than half my life, any claims to the contrary are fake news!

(No, 42 is the number from the book that made DON’T PANIC! a famous quote, and nothing to do with my age — Stephen King’s 19 is closer to that, at least mentally!)

Well, I’ve got more than just a TV to transport to a new residence

In late 2011 I felt like giving up on London entirely out of depression, and in late 2014 to early 2015 I felt anxious that I wouldn’t be able to stay and continue doing the things I enjoy.  Nothing much happened in late 2017 to early 2018 other than the trivial matter of discovering I had a brain tumour, which led to me spending a mere five weeks back in Worthing before coming back here, but now, another three-year cycle later, I find myself wondering once again…

Apart from the Castle (which now needs pre-arranging for climbing), my personal trainer (who I see online these days anyway), and my job (for which I’m almost entirely homeworking), I feel little to keep me here — and much to drive me away.  Apart from the house being hot in the summer and cold in the winter, “ambivalent housemate” is right back to his bad ways: as well as being condescending to me (e.g. when I sold my old graphics card for “too little”), he makes a lot of annoying noises, especially when his own homeworking day comes to an end about an hour before mine, making me want to avoid him.

Sometimes it’s like “drummer-trucker” of 2017 is back in the house, only now he’s slightly more well-behaved!

(Loudly pretending to play the trumpet, singing badly (deliberately?), firing a pop-gun in the kitchen every day with one of our female housemates, listening to audiobooks at maximum volume in the hallway, knocking on doors with that infernal shave-and-a-haircut rhythm, his sneeze, his laugh… how ironic that he left his previous residence due to two unrepentantly noisy housemates!)

But don’t panic!  I think I’ll just find somewhere else in London to live, still convenient for work (perhaps even a slightly longer Tube journey, so I have time to watch a whole 25-minute episode of Japanese anime or American animation before getting off), but — despite the horrors I saw in January 2012 — I feel like searching for a single place, albeit not a studio flat under any circumstances.

Much as I’d love to live with my family again… no, I can’t say that — having it as a fallback is wonderful, and obviously I’d be happy to see the dog every day (since she’s the one family member I can’t talk to over the phone or Skype), but once again it’d be like giving up on the prospect of escaping Worthing, and resigning to us all living out our days in that cancerous polyp on the anus of Great Britain.

(An old Red Dwarf quote… ah, and just like in 2013, I still don’t want to be a boring grown-up who drives in London and only drinks wiiine — and I still listen to Gwar, and impersonate Beavis and/or Butt-head, as well as using funny sound effects on mobile phones!  But working overtime, alas…)

One thing is strangely more significant than it at first seems: I’ve bought kitchenware recently that I’m certainly not willing to bequeath to this household so soon — a wok and a frying pan — which means I still want to cook for myself, instead of burdening my folks (or the local pizza place).  That plus a big TV stand (no, really!) shows that I’m still investing in my own life, and want to continue living away from home as a responsible adult, in my own space.

Besides, do I really want my PC of Theseus in the same room as the Frankencomputer…?

Self-isolation (with apologies to every other blogger in the world)

“One night last week, some fools got the electric light in order, and there was all Regent Street and the Circus ablaze, crowded with painted and ragged drunkards, men and women, dancing and shouting till dawn.  And as the day came they became aware of a Fighting-Machine standing near by the Langham and looking down at them.  Heaven knows how long he had been there.  He came down the road towards them, and picked up nearly a hundred too drunk or frightened to run away.”
Grotesque gleam of a time no history will ever fully describe!
—H.G. Wells, The War of the Worlds

By coincidence, this is where I’m up to rewatching The Twilight Zone from the beginning!

I’m still alive, and the closest I’ve got to coronavirus seems to be just hay fever (and the sort of catarrh I always get three seasons out of four), but I’m certainly sick of staying indoors and being away from human contact — and the rules regarding this are now being tightened!

I know: when I’m on leave from work, I tend to just sit in front of this computer and play endless computer games, and due to aches and pains I’ve not been out dancing or climbing in the evenings lately, but at least during my breaks, I have the choice of going to the shops, or the park, to stretch my legs and get stuff (and maybe pet dogs). Plus, of course, I can still let my personal trainer torture me on Fridays, as a final penance for the reward of the weekend.

However, sitting constantly in front of this contraption 9-to-5, with maybe the chance to go outside and get food at lunchtime (which will be hard now that our local Tesco is making people queue outside), while keeping an eye on the helpdesk ticket list, really sucks — and not solely due to my having to do my job remotely over the Internet, but largely; the other aspect being forbidden from travel via public transport, resulting in having no opportunity to visit my folks (and the best dog in the world) down in Worthing.

Last week we sorted out just about all our staff being able to work from home, but at times I’ve felt anxious about either doing something wrong, or having done something wrong at some undefined point in the past — and since I can’t speak to my teammates or our flock face-to-face (the office has been closed for a week now), it’s all… well, even more uncomfortable than in the weeks before.

He’s truly been ill, not just drinnnkinnninnnge!

Mostly I’m getting things right, at least in terms of simple chores (like helping staff to restart their laptops); this is to spare senpai and the Asian Eddie Hitler-lookalike from tedious side issues while they work on far more serious tasks, like keeping our remote services running (fair play to them for enduring this and having families of their own!).  The latter’s been snappy at me even over little things (like misunderstanding him breaking his own vow on using an IP address instead of a machine name for remote access), and at times I’ve felt like chucking it all in and finally handing in my notice — but since he’s been suffering from something not unadjacent to coronavirus, I’m willing to stay in my job for now, and not hold a grudge against him.

Indeed, although “boss lady” was a bit impatient at times (as would be expected), she was otherwise perfectly nice, thanking me for setting up so many laptops during the onsite first three days of last week.  However, she’s said I can’t have a week off any time soon, because they really need me right now, due to how much work the others have taken on (senpai says they aren’t even getting paid overtime) — and due to a couple of big planned changes, there’ll be even more soon!

(Thanks again, Micro$haft, for announcing the retirement of Skype for Business and making us switch to a whole ‘nuther system — if you’d known this predicament was coming, would you have delayed it another couple of years?)

If it weren’t for sitting here in front of my computer to work, I would at least be able to, er, sit in front of my computer playing games, or watching TV (even if it’s entirely via web apps, as I’m unlikely to get the satellite dish fixed any month soon).  Fortunately I can have the radio on pretty much all day without disturbing the staff I phone (or, rarely, phone me), and between tasks I’ve got the chance, again, to learn to strum away on my guitar (which I can do without getting out of my seat) — perhaps this song being my greatest inspiration to learn the difficult F-chord.  I can also be a pen-friend instead of dating in person: I’m currently writing to a young lady teaching at, of all places, my alma mater, who needs help with both English and Japanese!

To be fair, I’m not missing the usual crowds of London, and certainly not public transport (even the Northern Line no longer being the “Misery Line” wasn’t enough!), and I do wonder what kind of fools would still want to hold big events with lots of people crammed in together, partying like the people in my Wells quote above, because they think they can celebrate the end of the world… but then again, I’ve never liked that anyway (one reason I’ve never been a footie fan).

On the other hand, I feel unhappy at the risk of being fined, or even arrested, if I’m suspiciously outside for a reason the coppers don’t like (even though we’re supposed to be allowed to get a bit of exercise and buy food at shops), or if walk past someone on a narrow pavement instead of stepping into the road (in front of an admittedly-rare car) just to maintain an arbitrary distance.  The police in this country are at risk of only caring about numerical targets, hence going after litterers because it’s easier to feel their collars than go after burglars or murders.

I guess it’s another necessary balance: follow the rules for now, out of compassion for other human beings (and one’s own safety in the same situation), BUT hold the government to account, and ensure the rules are reasonable and necessary (for example, fines should never be regarded as an opportunistic revenue-raiser) — and, unlike Trump’s yuge idea, we should be allowed to resume our lives once it’s known to be safe, for our own sakes, not purely to “save the economy” when it’s still unsafe!

(Funny how those at the top denigrate poor people living paycheque-to-paycheque for not having somehow kept savings for a rainy day, at the same time they call for big businesses to get bail-outs from the taxpayer — is this one-sided libertarianism, where “tax is theft” only when it’s used to help the little guy?)

Well, if I’m under house arrest for the duration, and getting way under 10,000 steps a day (and can’t even pet people’s dogs now!), at least I’ve got the opportunity to post here a bit more often, eh guys?  Guys?  Er, guys……..?

One year on…

One year ago today was my big operation, and I’ve come through the intervening time pretty well, all things considered.  The issue hasn’t been fully resolved, of course — some of the “space invader” lingers within, and one day will almost certainly require radiotherapy — but the dizzy spells are almost gone, and it’s only the side effects of one of the medications that’s causing me trouble, and decreasing its dosages while increasing the dosages of the other has massively improved things.

Why, I can even keep my attention on something long enough to actually write in this blog more than once a month… I’m actually thinking of future posts, such as reviewing my progress in my 2013 “exploring emotions” series, talking about how much I loathe heterosexual white guys at the moment (despite being one myself, or perhaps precisely because of it), or explaining my Captain Kirk-inspired views on what “left” and “right” mean in political terms (since both are hurled equally as insults in Facebook discussions… I know, serious business!), but for now I’ll just keep you informed of my condition, and how life’s been going since that day.

Well, things aren’t all rosy for me a year later: I’ve once again, again, come down with a cold, for the second or third time since Christmas!  I’m feeling dizzy (though not in a “mind static” kind of way) due to the numerous tinctures and philtres I’ve been taking, in a futile attempt to cure my sore throat and snotty nose.  It also doesn’t help that I’ve regained the weight I lost last summer, and not in muscular weight due to becoming buff and ripped; rather, due to medication combined with, er, Easter.

(Fortunately, last night I made a heinous mistake in buying a Polish variety of chocolate truffles which taste astonishingly bad, possibly from their alcohol content — is this enough to put me off chocolate entirely, for long enough to get me back below 13 stone?  Hah!)

At least those closest to me are doing better now: my mother’s been through that dental operation without lasting harm (though now her computer’s going wonky), and “best mate” is no longer threatening to return to Ireland forever (though he’s still got that incoming housemate’s stuff filling his room until the end of May).  It’d be nice to talk to “Polish female best friend” more often, but she’s going through a hellish week work-wise, and can’t meet up — so although we communicate through Facebook’s PM system to check on each other, it’s a long time since I heard her distinctive text message noise…

And yes, I’m still working on that subject as well — and thus, not only have I made my main ringtone Peter Griffin singing “Surfin’ Bird” (also with the possibility of a Pythonesque overly-long name, to complement the Four Peters that I’ve had for years), but I’ve taken a major step: no longer wanting my mother to text me sounding like an Amnesia monster, I’ve replaced her text message noise with Moose the Boxer from the ClearScore adverts!  She is of course mortally offended at being compared to a dog, which is part of the reason it makes me laugh.

Speaking of dogs, I am still petting them when I can (especially the gigantic Samoyed who lives locally, and runs up to me whenever I encounter him taking his owners for a walk), and as I’m sure you remember, it helped me during my recovery last year — apart from anything else, it got me out of the house and going walkies myself, with my mother for support during my convalescence in Worthing, and later by myself back here in Finchley.

Much as I am grateful for my folks bringing me up and taking care of me, I hope I don’t have to go back to living with them in that dump of a town, and can one day help them escape —  but even though it seems a short time since I finally began returning to work, things have been changing big time, including our taking on a whole new, highly-paid team of contractors… and there’s rumours of redundancies coming up to pay for this gamble!  Fortunately, one of my teammates is trying to edumacate me better (in complex matters such as setting up servers, though this is physical as well as mental), so I have a better chance of being kept on — or, worst come to worst, finding a new job before my savings run out and I get kicked out of rented accomodation for being on this country’s utterly unfit-for-purpose benefit system.

(And consider the fact that the Job Centre right here in Finchley Central closed a year or so ago — so if I had to claim Universal Credit, I’d need to go all the way to Hendon!)

“Hello, David; I want to play a game — is it safe?”

Sorry, politics… at least I’m not disabled (or at least not yet), but I’ve been urged to get myself innoculated against two childhood diseases I never had, measles and mumps — because I only had one or two injections as a child (I remember my mother mocking the way I said “injection” in reference to the sore spot on my arm), and my BCG at age 14 — and they may well be making a comeback thanks to the anti-vaxxer movement.  It’s difficult getting an appointment at my local quackery, but there may be a walk-in centre nearby, where I can get some advice on whether it’s necessary at my age, and whether it’d interfere with my medication.

And worst of all, I’m overdue for a dental checkup — somehow, lying in a hospital bed having my skull cut open this time last year seems less terrifying a prospect!  Hell, some of the deadly tests in the Saw films would be preferable to dentistry…

— — —

P.S. I’ve finally finished my latest medley of Gorillaz, Radiohead and Jamiroquai songs — worth mentioning that the last one was…

Aktion T4 on the cheap?

My MRI revealed that, with most of the invader removed, the left side of my brain has recovered most of its shape!

February came to an end with at least some good news for me: the remnants of my brain tumour haven’t started regrowing yet, nor are there yet any signs that they’re about to do so, and thus, unless I start getting unusual symptoms (for now it’s more like I’m returning to my old self, perhaps due to a change in medication), the quacks won’t need to scan my noggin for another six months.  I’m not out of the woods yet, but for now, I can relax.

And this is particularly good news to me, because disability wouldn’t just be frustrating and depressing, leaving me unable to do things I enjoy, perhaps rendering me housebound, or finding difficulty communicating (wonder if it’s a coincidence that I empathise just a little with the protagonist in King’s Duma Key, having occasionally to remember a word by thinking around corners), but under our current government, it could leave me starving in the streets, having been declared “fit to work” no matter how ill I turn out to be.

Yes, it’s time I finally wrote angrily about the many, many news stories I’ve been compiling in a list since October last year, thanks to posts on Facebook by groups calling out the Tory administration for unfair treatment of the disabled.  I know, I know, “Facebook — serious business”, and some of them come from “left-wing press” such as the Mirror, the Guardian and the Independent, but I’d love it if all of these stories were false, scaremongering, fake news… in the words of Donald Trump, believe me.

(And the Mirror hasn’t been edited by Piers Morgan Moron, a man even more despicable and unlikeable than Trump, for years!)

I originally planned to write this after one month of recording, to cover such things as people being declared “fit to work” and denied disability benefits for such ludicrous reasons as being able to make a cup of tea, or being the chairman of Scope, and if the application process run by non-professionals isn’t intimidating enough (a man with a brain tumour expected to fill out a form for six hours, apparently because he belongs back in Scotland), and those with mental health problems (such as autism) being treated unfairly, and people being driven to attempt suicide (including women), despite a minister supposedly being appointed to discourage this, it seems genuine cases of disability are being refused, with evidence of deliberate lies in assessment cases, the DWP itself potentially altering reports, and the possibility that it’s down to Iain Duncan Smith himself, who thinks the disabled are just parasites and need to be driven back into work (presumably including that chef who went blind), his opinion encouraging others to attack them in public, despite the fact that they’re getting less than in the 1970s, have to pay for their own diabetes medication, and face starvation under Universal Credit, the inequality they endure being made permanent — not that the Tories would allow you to see their own paperwork about it, though they admitted medication may be unavailable if there’s a no-deal Brexit!

No, that’s not five months’ worth, that’s just a selection of the stories published in October last year.  Shall I go on to November?  The DWP screwing up so badly that a disabled man was evicted, another man getting cut off benefits for eight months due to missing a single appointment, a girl having to sleep in her school library, and the Tories acting like they cared when actually they weren’t openly admitting they needed to improve things?  And while this was the DWP under Esther McVey’s watch, it’s possible she didn’t quit in protest over the Brexit negotiations, but to avoid embarrassment — and her replacement, Amber Rudd, immediately dismissed the UN report that had been acknowledged by the select committee as worth investigating (not that parliamentary enquiries are necessarily honest, of course).  Still, at least the assessments seem to be recorded now, and a lot of benefit denials are being overturned on appeal, which should help the Belfast man being interrogated despite being unable to move, talk, see or eat (just to show it’s not exclusive to England).  And unpaid carers who receive benefits aren’t being treated decently either.

But December, that was leading up to Christmas, wasn’t it?  Well, one early present was the final admission that Motability, the private company employed to provide modified transport for the disabled, was operating a ripoff service, which prompted its overpaid boss to quit, its service apparently being bad under him.  Why, even the Daily Fail criticised him for lining his pockets (and the company as a whole for sitting on a huge amount of money), so he didn’t appeal to the right-wing press either!  Which is surprising, as you’d think they’d support a government who removes benefits from the disabled when they move to Universal Credit, and makes things worse for them instead of better, with things like the bedroom tax leading to threats of eviction, the police targetting disabled people in public protests, and even large numbers or even proportions of people in the regions losing disability benefits, even ex-soldiers.  Fortunately, despite massive cuts in legal aid by the Tories, some are able to challenge and get their benefits reinstated (even in Northern Ireland), for all the good that does in some cases.  However, this means the government has been wasting even more money fighting this, apparently still thinking the disabled are scroungers, but they themselves deserve to be rewarded and the disabled left with virtually nothing at Christmas!

2019, however, has seen entirely positive treatment of the disabled right from the start of January… well, aside from a woman losing her transport, a dyslexic man almost evicted because he can’t complete a form, a mother left unable to pay rent, a man denied benefits despite a heart attack officially rendering him “unfit for work”, a Belfast girl rejected despite having Down’s syndrome, a dying mother given nothing thanks to a falsified assessment, a mentally-handicapped man left in debt because he can’t use a computer, and even a cancer sufferer and his brain-tumoured mother being cut off.  Oh, and a Paralympian being cut off and losing his job.  And a man who needs kidney dialysis being left living in a caravan.  But hey, at least one man was back-paid, even if it was just after he died, so all’s well, right?

The DWP itself admitted many thousands of disabled people died while waiting, presumably thanks to a useless group of MPs who achieved nothing — and note that while they were supposedly trying to make society more “inclusive” for disabled people, it seems those with mental health issues, including those who can’t do their sums, may effectively be punished for working!  And when even Murdoch’s Sun has something to report, instead of just the “left-wing” press, you know this government really is screwing the disabled out of money… even those who work for them!

And finally, February: presumably so people could be denied benefits despite barely being able to walk (whether old or young), having three brain tumours or even only one leg, the DWP has now told doctors not to give out sick notes and ignored its own safeguarding methods, and ministers decided the disabled should still be sanctioned (even if they sent a letter to the wrong address) — and never mind people dying waiting for decisions, even those who have already died apparently should be harassed!  And that may include the disabled among their own staff

— — —

It took me this long to find the courage to actually write this blog post (hence I ended up saving so many article URLs, the ones here being only the most “interesting” and relevant ones).  A number of these have involved brain tumours and mental health issues, and while I’m doing okay at the moment, the possibility remains that my condition would deteriorate in a similar manner — indeed, when it comes to further treatment (such as radiotherapy), which can cause further problems, it’s a matter of when rather than if.

My mother’s already worrying about how she’d need to take care of me in addition to my grandmother (if she lives that long), despite herself potentially needing care in the autumn of her years — but I’m not going to contemplate suicide just to avoid burdening her, and will fight through this situation (which, ironically, I’ve found easier to face than my depression in late 2011 or my anxiety in late 2014).

If one day I’m unable to care for myself but have no-one to help me, and the DWP situation in this country hasn’t gotten infinitely better (which is hopefully a yuge “if”), then yes, I’ll consider euthenasia, which will prompt me to write an epitaph utterly condemning the government (and damning their families for three generations) for what appears to be a cheap and dishonest version of Nazi Germany’s Aktion T4.  While Hitler openly regarded disabled people who couldn’t work as a burden on society, he wanted them to receive “mercy killings”, which would have required additional manpower and resources; our current right-wing government, by contrast, claim to be helping the disabled, but seem to be secretly finding any excuse (up to and including faked assessments) to declare them “fit for work”, cut off their benefits and leave them to starve (or commit suicide), not even paying for their funerals.

However, due to the legal action enabling reinstatement of benefits and the resulting back-payments, the DWP have allegedly spent MORE money than they would have done if they’d kept the disabled on the same benefits they’d received before the rise of UC.  This has been much like adult social care here in Tory-run Barnet: privatised a few years ago, it needed a massive taxpayer bailout after ONE YEAR!!!

Thus, I conclude that when it comes to helping the non-working disabled, the Tories are at best incompetent, and at worst callous, cruel and devoted to killing them off entirely, for the sole purpose of saving money… and still incompetent!

On that basis, there’s as much chance of me ever voting Conservative in this country as there is of me voting for Trump in the USA… and yes, I know I’m not an American citizen and thus not entitled to vote in a Presidential election — zero equals zero!

Bad medicine

Don’t worry, I’m just using it for the “ludicrous number of pills” imagery… at least for now

I’m still on the pills to stop me from getting any more of those “mind static” partial seizures, and while mostly it works, at times things can still get strange for me — and it doesn’t help that I made a major error last year regarding one of the two drugs I’m on, while the quacks think I should come off the other entirely, as that’s likely to be the source of my weird symptoms (rather than the “space invader” making a comeback so soon).

It doesn’t help that, much like over three years ago (and still with that GLC quote in mind), I’ve got a cold — no, not the one I had over Christmas, a different one now — and both things leave me with the prospect of offending someone at work by being too “abrupt”, and getting myself in trouble again… especially today, when I had to rush home in the vain hope that my local pharmacy would have my repeat prescription, when in fact they didn’t, and I had to go see my local surgery again, just before it shut for the day!

Just to summarise, the hideous concoctions I’ve needed to take since my diagnosis early last year (2018, if you’ve forgotten it’s 2019 already… go ahead, put up your new calendar, I’ll wait…) have been let— levit— levetin— levetiracel—… oh, fine, Keppra, let’s go with that, which I think holds back the worst of my quasi-epileptic symptoms; and lamotrigine, which I think negates some of the Keppra side effects and helps me manage my emotions (my personal trainer said his mother was taking this drug as well), though the latter I started after briefly being on clobazam at the start (which helped me feel a lot better, but which I could only take short-term).

The quacks I spoke to late last year (with my supportive mother present) think it might be the twice-daily 1,500mg doses of Keppra that are leading to my not-quite-the-same-as-before dizzy spells, where although I don’t lose the ability to understand English, I nonetheless hear things differently at first, and may then experience what I can only describe as metallic sensations in my head, possibly leading to tingling on my right side (controlled by the left side of my brain, of course); on that basis, they may recommend I come off it entirely, and switch to something else with different side effects — but hopefully only until I can come off drugs entirely, when the pesky intruder in my cranium has gotten out of town and gone back where it came from.

(If only I had Trump’s budget to build that wall, eh?  Eh?… oh, please yourselves!)

Different brands have affected me differently over time, and I think I’m better if I’m not taking actual Keppra but one of the other varieties of leve-wossname — but it’s the other drug, lamotrigine, which I was prescribed at 50mg twice a day, where I made a critical error.  Remember last August, when I said I’d been given “clearance” to reduce my dosage?  Big mistake to even try — and not just for immediate health reasons: getting my quackery to approve a repeat prescription for 25mg instead of 50mg tablets, so I could experiment with taking two or one at each dose, seems to have made them think my overall dosage had been reduced to 25mg, and so the repeat prescription my local pharmacy gave me just before Christmas effectively included two months of “I Can’t Believe It’s Not Keppra!”, but what amounted to only one month of lamotrigine, and this has just run out.

Don’t you just love it when you need something important, but just can’t get a sensible update on its progress?  I asked for a repeat prescription at my pharmacy after work last Wednesday (couldn’t go to the quackery as they close early on Wednesdays), this time for 50mg tablets, and they seemed to be fine with it — but they said it’d take three working days… and though they told me nothing out of the ordinary when I chased up on Saturday (just that it hadn’t arrived), it was only today, when I rushed home early from work, that they said my doc hadn’t approved it, and I’d have to go visit the quackery!

Fortunately (a) the pharmacy were able to give me a week’s supply of 50mg tablets, and (b) the receptionist at the quackery was able to arrange a proper repeat prescription (with a doc who was offscreen for the entire scene), so hopefully I’ll have enough at least to last me until the second half of February, when (after my first MRI scan of 2019) I’ll be meeting another quack for what I hope will be a discussion of medicine, and how I should proceed on that topic.  Assuming it doesn’t get put back suddenly (and that Southern Rail don’t have any of their usual problems), I’ll have my mother there to support and guide me…

However, different brands of lamotrigine can also have different effects upon me.  The ones I had over Christmas (and for which I’ve been given another week’s supply today) weren’t bad, but as a stop-gap solution I’ve briefly switched over to the leftovers of the different brand I got in late 2018, and which may well have been in no small way responsible for strange feelings of déjà vu I’ve had at times.  For example, the play I saw with “Polish female best friend” just before Christmas seemed oddly familiar, despite A Very Very Very Dark Matter having only started showing in 2018, and at the weekend I finally began playing Batman: Arkham Knight for the first time, only to think I’d experienced cremating the Joker’s corpse before, realising it wasn’t a passive cutscene and that I had to actually press something on my joypad to make it proceed!

(And I’ve been listening to Gwar again lately… well, I’d listened to them so many times in the past, it could hardly be unfamiliar and brand new to me, could it?  I practically sing along, at least inside my head!)

Well, if it’s snotty, at least I’m past the coughing stage

I’d love to get off all that stuff sooner rather than later, since it’ll be three years before I can give blood again, and I feel like I owe the world such a donation (it’s not enough having done it around 25 times before 2018) — but it’s worth noting that I’m getting cold symptoms again, almost as though I’m returning to normal (for a given definition of “normal”).  Thus, Lemsip is one of the other major drugs I’m on at the moment, and I’m also popping vitamin pills at dinner times, in the hope of making up for whatever nutrients I’m lacking and thus getting sick.

The cold January weather isn’t helping: aside from wondering whether my hat-with-flaps is putting extra pressure on my skull (!), I’m finding it increasingly difficult to keep my room warm without resorting to turning on my wasteful electric heater; somehow I’ll have to persuade my female housemate to let me keep the heating on all day, every day this week (especially if we get snowed in and I have to work from home, not an entirely unpleasant prospect), and to turn off her own damn radiator if her room gets “too hot” in winter, of all seasons.

Plus, after meeting up with her for a visit to Freud’s museum, “Polish female best friend” has left the country once again (hopefully Brexit won’t stop her return in April), and “best mate” is stuck working outside London for another week, leaving me with virtually no-one to hang out with, especially since I can’t go climbing in this condition. Worse, I couldn’t visit my folks at the weekend because (a) they’re doin’ up the house, and (b) the trains were in a state once again and it’d have taken me at least two changes each way (Southern Rail get their second negative citation in this blog post).

Perhaps it was lucky, as I might have spread this phlegmy cold to my mother and/or grandmother, and they’ve suffered enough lately… but maybe the cold itself is a refreshing change: could I be entitled to take my first proper, non-surgery-related sick day in years?  I think the last bad cold I had was in August 2016 (shortly followed by a worse condition), so it’s about time, isn’t it…