Kate Nash

I never realised how good she is. I am a bit shocked. Check her out. There's a doc on her struggles - probably on YouTube by now - that highlight how hard you have to want something in order to get it. She reminds me of Bowie, or Cobain. That spirit. I must, I must - never mind the hardships, the failure. I must and dammit I will. I admire that sort of thing. There are many ways in which to live. You often get to choose how you do it. Never forget that, my boy.

Better

Cancer is odd. I feel quite good today, and miles brighter than in the previous post. My doctors are happy; the meds are working; I am basically slightly high on thc all the time, which makes me feel disrupted and woolly, but I've had worse. My body is cool with its bad self.

I am very introverted today though. Don't really wanna talk. Have barely spoken to anyone today. Maybe tomorrow.

Bideford's Pikeys

Our buggy has a toe-powered lock on its wheels. That is to say, if you pull it down or up (I never know which) it will lock each or both of the wheels (again, I never know which). So we're in Bideford this morning, and all is well. I am a little doped up, but fine, until some pavement drunk - I mean, the guy was in the bag and it was 10am) - decides to laugh at my inability to undo the bastarding pushchair's Mystical Locking System with my right toe, which is bleeding because I've already stubbed it on the Mystical Locking System four times by then. As Tam is thirty yards away carrying the baby for some reason known only to herself, she fails to hear my hissed entreaties for assistance. Said inebriate notices though and is all 'Oh, you have to get your ladyfriend to help, do you?'

All my life, I have been bullied because of physical shortcomings that Nice People overlook, and Fucking Arseholes have a go at. It's given me a bit of a thin skin. Mostly, now that I'm no longer a callow youth, I can spot these FAs a mile off, but recent mobility changes have accentuated some of my shortcomings. Apparently, then, it is now Fine for street-drinkers to have a go if I stub my toe as a direct consequence of having cancer and a toddler.

Thus exasperated we continued with our shopping until lunchtime, at which we bought some pasties and looked for a bench to sit on. The moment we sat down, of course, about 11 kids from the same shouting, heaving feral mass family descended on 'our' bench. Literally crawling over Leo and shouting 'BABY!' at a volume designed in his six year-old mind to get the attention of his thick-as-fuck mother and draw her to him. It worked, he was told to go away, and he did. The little square seemed to be full of these little pre-teen scrotes and Tam - I think - motioned to leave.

However, she must have done so almost silently because I sat down and stuffed in a bit of pasty. Next thing you know, scrotes return and are all over Leo - literally climbing to see him, really invading his space etc. So I said: 'Leave him alone, please... he's only little... be careful... leave him alone.'

Pikey Child A just started to lean on Leo in his buggy, so I told him, pretty firmly: 'Get off him. Get off him. Get your hands off my son.' I had to gently pull the kid away, but I did no harm. Sensing things could get ugly, we left, and a stony-silent hour followed. She's pissed at me because I won't be pushed around by either pavement alkies or council tenants, regardless of age. She thinks it's embarrassing that this has happened.

She blames me for not hearing her lip-syncing from 20 feet away.

She thinks I am an idiot, and a liability.

She probably sees herself as the caregiver to two babies, neither of whom can look after themselves, and she'd be right, because that's what I am sometimes. She is right. I am wrong. She is right. I am wrong. She is right. I am wrong. Repeat to fucking fade.

I've had enough of being in the way. Life would be easier for everyone without me in it. I've peaked, anyway. I've also been told what to do for the last 13 years, and lost myself along the way. I can't make decisions for myself anymore. Everything goes via committee. I have given her everything I have, and will ever have.

Sometimes I think back to, say, 2001. Lucy died the previous year, but I was ok. I had a girlfriend. I had spare money for CDs. I had no bills. I had a plan (get to Future Publishing, then move to Bath or London after a year or two). I never worked particularly late. I never had to worry about everything. I lived at home, and rode a bike to the station in New Milton every morning, and was home at 6pm on the dot. I had no worries. Life is just fucking worries now. Even good days are good* days, and the asterisk means what you need it to mean. You just exist. One day follows another. Sure, there are bright patches, but it's pretty unsatisfying. Even if I do go back to work, it'll be under the *potentially committing tax-evasion subclause. It is impossible to relax and enjoy life. This is what life really is. Eat, sleep, repeat.

I'm fucking right, though. I'm sorry, but you know it. The light went from me the day Leo was born. I have done my job. There are no more rivers to cross. Downhill and out.

Fear Number 1

I fear that the weight of history will judge me as follows:

a) Great talker, rubbish doer.
b) Bad tempered, oblique time-waster.
c) Bad father.

Life is

... a sequence of disappointments, growing in stature and frequency as we age, until eventually they peak, and darkness descends at last.

Despair, followed by hope

This morning, I felt awful. Really weak, siezy, nasty, deplorable, dirty, sad. The fucking works, mate. I wrote this on a closed group for GBM sufferers that I had been lazily avoiding joining. It's not pretty:

Hello you wonderful folk. I am a first-time poster - it's nice to see so many people taking the fight to the Big Bad, and so many heartwarming stories on here. I'd best introduce myself: I was diagnosed with a right-parietal GBM (initially 5.1 x 2.9cm) after four 'grand mal' presentation seizures on October 27th 2017. No prior warning, other than feeling a bit odd for the previous few days, which I blamed on a trip to IKEA :)

I had an awake craniotomy January '18, combined chemo/radio and six sessions of chemo, and we appear to have severely damaged the tumour. The consultant at the next two scans (both positive and showing more shrinkage of what remains) mentioned that 'downgrading' the tumour is a possibility. So I have been on six-month checkups for a while, and we are being positive about things.

However, in the last few weeks, my symptoms have returned, and are getting more aggressive. I've needed to double my keppra intake to 3000mg/daily to remain stable, have had significant panic-driven 'seizure-like' symptoms - don't know whether they're actually seizures yet, but I'm still conscious. These are controlled with mirtazapine and occasionally a bit of lorazepam.

I am waiting back for scan results for a scan I had earlier this week, but was wondering whether any of this sounded familiar, what coping strategies you use if fits are a fact of life, or any other tips you had for remaining 'stable'. I am not due to see my regular consultant for 30 days - will my recent scan automatically trigger an appointment with my specialist? Or should I kick off and get one myself? Lines of communication are confusing, and I am much worse on the phone than I used to be.

I take Quercetin, Resveratrol, Circumin,Sulphurophane, reishi extract, CBD, turmeric oil, avoid alocohol, sugar etc etc, and I don't accept my fate. I will resist.

I'm only 40, and this disease has already taken my sister at 19. I have a worried wife and a bouncing 13-month old son, and I want to stay around long enough to walk my baby boy to his first day of big school. It's not much to ask, but on days like today I fear I'm not going to get there, and I don't know what more I can do.

Any suggestions/advice welcome. Thanks for reading, and keep on keeping on x

1111

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  Brenda Qpr Ravening I have no answers you sound amazing i I am a survivor xx

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  Lesley Fulford Hi Alex. Glad to hear another person is fighting too. 
  
  Think the process for feedback of scans will be different in different areas. So might be best to check with your clinical nurse specialist if you have one?

As you can see, it's a bit bleak. Then the postman arrived, bearing my latest experiment - CBD Vape Oil. I don't like smoking anymore, as it kills you and makes your clothes smell and is expensive beyond reason. However, I have always liked the sensation of smoking, so I consider myself a recovered smoker. I still dabble, but nowadays they just make me feel sick, so I don't bother. Nothing like a cancer diagnosis to straighten the old tie on that front, let me tell you. So anyway, I charged up my new vape pen thing, had a puff and BOOM!

Headache? Gone.

Numbness down left side? Gone.

I was astonished. Obviously I had another bang on it.

Same again, except a more relaxing version. I continued to be astonished, told Tam, and for the first time in literally months, I spontaneously laughed out loud. It was like being free for the first time in months. I felt light. Capable. Stronger. But not paranoid, or high, or anything else. Just fucking BACK.

By that time -about 1030, I had already exceeded my daily dose of my AED, keppra, and posted the above message. At 1130, I tidied the house. At 2pm, I walked the dog, and took the stairs at full speed, leading with my left (supposedly weaker) foot for the first time in this house. I have had no more Keppra since then, and I am now due to take a 'standard' 1000mg tab. I am a bit tired, but the stress is manageable at last. I love it. I am also more relaxed generally. I should have done this years ago, never mind post-diagnosis :)

We fucking continue. Come on!

Still happening

Another two near-miss fits in the last two days - much less steady. I have no idea how we're going to cope if this is a regular thing. I have upped my keppra dose to 3000mg today. It was an effort to shower, and I had to time it so that I was feeling relatively stable before making the dash to  the bathroom. Once in the shower I was ok.

Scan yesterday was fine. Should have results or an appointment by the end of the week, I'd have thought. This is some scary shit, though.

Just another manic Wednesday

So, I'm writing a blog when I should be doing as little as possible, really. I am starting to use this as a secret little space to document whatever is happening. I'm currently really tired, having been up since 0610. I should have had a sleep but didn't want to, and now proper pre-Leo's-return sleep is all but pointless, since he comes back in about an hour.

Dinner is simple, and he is a total joy, so I look forward to him coming back, anyway. Settling him at seven might be arduous, but I'm eating early - about 5pm - so I should be ok. Today I'm planning on taking 2,750 keppra to combat tiredness, consistent dizziness and fatigue. The latter is my main enemy at present. Physically, apart from being easily confused, I'm doing OK. I mean, I exist, and do as little as is humanly, but I'm not having seizures. Whoo. As long as Pam doesn't have to put me to bed like the last time Tam was away, and look after Leo etc, I'll be happy. We deal in slender margins on days like this.

I know I'll feel much better tomorrow, too. I just have to get around Wednesday. At least the dog's been walked, eh? Win. Will just lie still for an hour now the house is straight and see how things are at 5pm. Praise be to the microwave, for it is our saviour.
-----------
EDIT: I spoke too soon. Non-focal, conscious seizure, about 1930-1950. I'm writing this a day later ( May 9th 2019) and I am noticeably weaker. Left-side is well down, regardless of keppra intake, pins'n'needles on inner left thigh, genitals (?!) and down entirety of left leg. The end is beginning. I know it.

-------------
EDIT EDIT: Seems better this morning (Friday 10 May). God it's annoying, all this.

I'm Really Not A Very Nice Person

Logically, the following must be true:

Men who, in any way, physically threaten their wives, regardless of circumstance or provocation, are in point of fact, arseholes who deserve everything that comes their way. By that rationale, I am an arsehole.

I am, officially, not well.

I am, however, in full possession of the facts, my marbles, the SP, the skinny, my wits - whatever you wanna call it. I have little glimpses of a terrifying, illucid and splintered future, where what remains of me is wheeled around in a heavy NHS wheelchair, and Tam, her face lined by the collateral damage I've caused, and then my condition has leaned on in various spectacularly unhelpful ways, dutifully picks up the mess and silently looks forward to me dying.

However, I am not there yet, not by a damn sight. I am irritatingly alive. Needlessly so. A ghost at the feast, nicking bits of the starters before any of the guests turn up.

I seem to have very few actual, useful skills. Parenting skills? Well, now you mention it, let's see: I can barely feed you, clothe you, keep you entertained or move you safely from place to place. I could, of course, run off a list of the Things I Cannot Do, but I rather fear that, by the time you discover this blog, numerous other parties might have already furnished you with some details in that area. No, let us concentrate, instead, on Things I Can Actually Do Well.

Here goes:

I make a great cup of tea.

I am Funny. I make people laugh.

I am a good mimic. The last great thing that happened in my life occurred yesterday, when my Lord Baelish impression turned, by dint of a slight cough, into Al Pacino in full, bellowing glory. I am genuinely thrilled at this. It's like discovering that you have a special power, like flight or something, that you only wheel out at parties. It emerges, like a beautiful tropical bird, to wow your fellow partygoers, and then goes back in its cage and is taken home, its colours and welfare cared for, by you alone, in secret, until it is once again time to get the old trick out again. Like all of that, but with a brilliant impression of a Chuckle Brother or something, rather than a bird. You know what I mean.

I can string a sentence together, even if some of the sentences I have chosen to string together recently have been revolting enough that I immediately unstrung them. That one at the end of the last paragraph's a bit of a hack-job, innit?

I am plausible, despite my accelerating implausibility. I sound great on the phone, for a cancerous non-driver who can barely walk to the kitchen without getting lost and doesn't know how to get from the front door of his house to the pub 100 yards away without a bit of planning. Seriously. I am quite shite.

Today, after your mysterious insistence on extending waking hours beyond 2130, I may have given voice to the unsayable: I regret my life, in its current formation. I have had difficulty with depression before, I think, but I was, let's remember, a product of a divorced home, had loads of insecurities and a rock-solid nucleus of friends, but not loads of them. I have always had a darker side. I have also, more recently, thanks to various events in my life, gone towards the darkness more readily; I've felt at home there, distrusting others, assuming the worst of people, and being proven right in most cases. Maybe, though, the latter happens because of some sort of 'cosmic ordering' phenomenon?

ME: 'My life's shit, and full of double-crossing arseholes.'

ALSO ME: 'Maybe that's because you're attracted to (a) being right about everyone else being an arsehole and (b) misery loves company?'

I lay there, listening to Leo's wimpering, exhausted cries, wondering what on Earth I'd done wrong, and how either of us could relax and enjoy our evening. And I found myself longing to go back to a time when all was easy, and well-met. And I thought: 'When was absolutely everything absolutely fine? When did you last have no complaints?

I have been astonishingly happy since Leo's birth. Just not all the time. And frankly it's a lot easier for me to be sad, or to upset Tam so that we have a row and then I can justify my sadness. If Emma Ellis' Force Cancer people were around I would probably pay them a visit, but who knows, eh?

I'm just sorry I'm not finding the joy right now.

So it goes...

...today I'm much brighter. No head pain, minimal dizziness etc. Lots of CBD last night - maybe four big hits across the day, and no ill effects. Indeed, the more I took, the better I felt. Had a niggling headache until 3.30, but kept on, and it went at 4.30. Stayed up till 11, taking CBD and caning Game of Thrones. Feel really good this morning.

I have no idea what, if anything, to make of any of this.

Some days

Some days, like today, for example, and yesterday, if we're dwelling on it, are Black Days. On a Black Day, nothing matters. Death has the room that is my mind. Symptoms don't come and go, but organise. As if on an unseen rota, they visit each area of my body at random. Depressed beyond words, then tingly, then numb, then unbalanced, then sad, then that strange not-drunk-but-could-be thing, then back to numb, but in a different part of my body. Today, my little finger and I have broken up and been reconciled about 39 times. My left foot is in the process of divorcing my left leg, but she's fighting for the kids.

Then there's the headaches, which while not out-with-Tim-on-a-Bank-Holiday-in-2005, please-kill-me-now, Richter-scale-rewriting things of yore, are persistent, localised little fuckers. I swear I have had one for a day and a half, on an off, and all because I lifted a sofabed over a stairgate yesterday afternoon. Fuck this amateurish mess. More than once this week, I have begged the anvil to fall and end all this nonsense while we all have our marbles. It's not a happy place, my head. This is one of the days (or is it a pair of days) where it's obvious who's going to win. I am on the wrong pony here.

Mad little paragraph from two years ago in the middle of the night

You’re going to think I’m mad, but I have dreams, and in the dreams Jean-Michel is ageing. It’s as though he’s living in a parallel universe. And often he’s annoyed that I’m there, he’s like, “Don’t tell anyone I’m here Suzanne. Don’t tell anyone I faked my death, and especially don’t tell the New York Times!” He’s just living a really simple life, in the swamplands of Florida and he sells crocodile eggs. He has this hippy wife and about eight little dreadlocked children. 

I have no recollection of writing, or even thinking, this. But I did so, at 0149, on Tuesday 7 September 2017. 

I like it. Who is Jean-Michel? Who is Suzanne? Crocodile eggs?!

This is a little poem I wrote a long time ago

Beware the Witchpool

From the corner of mine, a witchpool of an eye 

Mako enamel flicks greying slick 

Mandibles' curl with gems gleam

Stolen birds'-egg eye, dishonest, milky-tea white.

White coals glow grey in darkness 

Unwavering, rapier indifference

Unspoken plans undisturbed

'Congratulations', it purrs, the very air malign 

A plagiarised knife-smile, seven hundred and seventy six sinews, all box-fresh, unused

Thanks, a hurried request

Gratefully, the door closes

Wow - what a busy month!

Sorry for the radio silence - really busy making our new house a home. You are almost a year old now, too - what a year it's been. Your pulling-up, standing and babbling are all coming on, too, and you're going to be one tall little boy when you've finished.

Me? Oh, I'm fine, thanks. Trucking on.

Sold!

We have sold Fern Villa. We have also bought a new abode, thankfully, and are moving on Feb 1st. I detest moving - the weapons-grade dickheads that find work in the conveyancing trade are enough to cause an embolism on their own. I can't really be bothered to go into specifics because it's too galling, but the first-time buyers at the bottom of the chain didn't realise they'd need their deposit ready before exchange, so there was a lot of needless delay and fuckery. This nothing compared to when we bought Fern Villa in the first place, and the crazy cunts we bought it from nearly pulled out on completion day.

You have to buy a house, really. It's not just a 'rite of passage'. You'll need your own space - a slice of quiet, away from the world, one day. If you live in a city, you can fall into the rent trap (your job keeps you going but you can't afford to buy, ever. From a psychological standpoint, too, I don't think it's healthy to keep renting... unless you live in London, or like listening to people you don't know fucking people you don't like through a thin, chipped-magnolia wall while you're trying to watch Eastenders, of course.

So yeah, we're moving, and I dislike that as a concept. I am physically OK with being close to Nigel and Pam, but I have reservations about how all this is going to pan out once Tam returns to work. I am sure it will all be good, but until we know that for sure, first we must pack everything, chuck out a load of stuff and shell out money all over the gaff. Yay. The prize at the end of the rope is considerable, but the rope is long.

Love you, Ma x

Susan Anne Cranidge, 17/1/47-6/4/11

Open your mouth wide/A universe'll sigh

There's a reason there's so much Radiohead in my Top 50 Albums list. They are, repeatedly, astonishing. Not to mention humble and wholly unimpressed by cliche and shenanigans. Ladies and gentlemen, 20% of Radiohead. I actually do want this at my funeral. Not the recorded version. This version:

Open your mouth wide
The universal sigh
And while the ocean blooms
It's what keeps me alive
So why does this still hurt?
Don't blow your mind with whys

I'm moving out of orbit
Turning in somersaults
A giant turtle's eye
And jellyfish float by
It's what keeps me alive

It's what keeps me alive

Dream Baby Dream

As well as being an excellent single by minimalist synth-botherers Suicide, this post highlights just how cute you are when you're off in Pepperland. I love you mate x

This is the Suicide song. Don't bother with the Springsteen version, it's ghastly:

Here you are now, entertain us...

I have been collecting video footage of you since you were knee-high to a tiny grasshopper. All my videos are in a locked Youtube channel, so I might have to review how that works, but for now, here are some bits of your youth you probably haven't seen before:

Jan 07, 2018 - you're nearly ten months old now...

Leo in the Forest, December 2018 

Leo's New Car Seat, Jan 7th 2018

Dog Training, December 2018

An email to Neil

I thought I'd put this here, to save me typing it twice. Neil is an excellent man. If ever you need any legal advice, money advice, general pointers with tax, work, the law etc, you should refer to a massive post I'm doing for this blog, which will be up in due course. 

If you can't use that for some reason, ring Neil. The man knows a lot of things, and will help wherever he can. He is there for you if you need him, always.



Dad x

Morning fella,
You well? We are all good here. Step-Pater tells me that you are in possession of several videos of me and Lucy playing with baby Jessica etc via an old camcorder you've dug up from the distant past. I would love to see them, as I am collecting old bits of footage for a family/legacy project for Leo so I'd like to add whatever you've got if I can? Let me know if you need any expertise digitising etc, as that is also very much in my wheelhouse.
I have also taken on a bit of freelance (and yes I am technically signed off). This is with a company who approached me out of the blue via LinkedIn. As they were in a bit of a pickle time-wise in the run up to xmas I was able to quote an astronomical fee with no hourly-rate attached, and then get the work done in much less than the maximum hours for permitted work under the PIP/DSA rules. Almost no time at all, actually.
Since I am not on means-tested PIP, I think I am ok to just do a tax-return by May 30th and all will be well... I think. There is a possibility of more work subsequently, but until challenged, I will just keep a note of what I'm doing and register for self-assessment as and when necessary.
Since none of the money's being spent and it's going into a tertiary savings account (not the one the DWP would be interested in) I see this as ok. What do you think? In a way it reminds me of the way several other people in my position or similar have operated, naming no names...
​Hope you had a good new year mate. Spent much of ours nursing Leo through a developmental leap which left him unable to settle at all, and his first go at bronchitis can't have helped either. Not a great deal of fun, really. ​He is back at full-speed now though. We have had a tired start to 2019.
Oh, and I am tentatively looking at the British GP next summer, as the doctors flippantly told me that Xmas 2019 looks ok for me. Monaco would be sunnier of course, but I have just looked up the prices. Ever wondered what a two-bed apartment overlooking Rascasse can be rented for over race weekend? The answer is £18,000. EIGHTEEN THOUSAND. Ha!
Al

On the Mend/2019 Ashes

Good news - your arse is healing up nicely, son. Also, your horrendous attack of the shits seems to be abating, too. Well done, you plucky thing.

We have just returned from a hack around Zeal Monachorum, with you in the sling, me with no sticks or other support, and your Ma on dog-wrangling/stick-chucking duties. It was a lovely crisp afternoon, and a total pleasure.

Later, after I've tackled the notoriously challenging North Face of the post-Christmas recycling mountain and your mother has whittled a meal from nought but the last sweepings of the fridge, I intend to watch The Greatest Showman, featuring Neighbours reject Guy Pearce.

Despite this being a musical that isn't Cabaret or Catherine Zeta Jones' Chicago, I have high hopes for it. No doubt my aim to accompany said tits'n'teeth extravaganza with the last of the Stoli will reap untold dividends. Looks alright, to be fair:

Even more uproariously, my old mucker Chris has offered me at ticket to a day at the final Test Match against Australia next September. Now, it's probably going to mess up our wedding anniversary, but I'd still like to go quite a bit. You never know, though - England may have it all wrapped up by then. Or I might be dead. Who knows? If you want to win, first you must accept the risk of losing. 

Your Sore Arse and Other Stories

So, you've got your first taste of proper nappy rash (pictures, sadly, are unavailable on taste grounds). You've also got a properly sore throat, and are on the verge of a notoriously complex developmental leap.

We are tired people so far this year. LOVE YOU!

On the upside, I met a complete stranger in the middle of the road in Bow today while I was out with Dog. Her husband died of a brain tumour, and her tale (he was diagnosed at 54 and lasted six weeks) made me feel humble, sad, and extremely lucky. I am exhausted a lot of the time, but I am also busy, and my meds work as well as can be expected. I should be grateful. I am grateful when the Fates put someone in my way (she was literally in the middle of the road) with wisdom to impart. This sort of random happenstance makes me think Everything Will Be OK. It won't of course, but at least I've created a sufficiently nuanced self-delusion to enable me to carry on.

My head was a bit 'buzzy' today - by which I mean it feels wobbly, too big, and a bit heavy sometimes. Almost as if there's a rotten orange in there that shouldn't be, I dunno. I guess I'm just aware of what's gone on. If I convince myself to ignore little wobbles and twinges, they go away. How much of this is mental, and how much physical? I've not a clue. I know it is Tuesday, and I'm broadly OK, and I won £9 gambling on Arsenal today, so all's not shit.

Now then, baby - if you wouldn't mind getting some kip we'd be most grateful. As I said, LOVE YOU.

A Wonderful Christmas Time

Christmas kind of crept up on me this year. You'd think, what with your arrival and various other things it would have been momentous. In fact, I thought it ought to be just that, but in real time, it was a lovely, fairly understated few days with my nearest and dearest.

Perhaps the positive MRI of a few days before took the sting out early, but no, I personally felt like it was another Christmas - a good one, and one I will always cherish, but not as epochal as I'd thought it would be back in, say, the dark, hot days of July.

So, what happened? Well, we got all the decorations up pretty early this year, by Hutchings standards - ours were finished on the 23rd-ish. I couldn't wrap presents worth a damn, so opted for the ever-reliable fail-safe that is the gift bag instead. As a consequence, I was finished with wrapping after about half an hour. I thoroughly recommend this approach should it arise in future, as I was able to make an early start on the Christmas Eve martinis.

Our only real concession to having a noisy nine-month old baby in the house was the addition to our festive arsenal of a fake plastic tree. Then again, you already know that because as you read this, you'll be aware of how redoubtable a tree he has been over the years. At least, I hope so, as he cost a fucking arm and a leg. Anyway, he is a beaut, as you can see from the pics below and throughout.

Our veggie Christmas dinner was fortified with 12 pigs-in-blankets, and your first taste of the unholy matrimony that is sausage. You went a bit mental for it, and I can't really blame you. I had nine of them. Yummy!

Your favourite present, I think, was the big red bus from Tim and Claire (via the good old ELC, natch), but you also loved your tractor and sheep combo, and you don't even know about your illuminated globe yet. Laugh of the Day goes to the unveiling of the giant lion soft toy we picked up from IKEA. You nearly burst with happiness, to be fair, it was pretty awesome.

Boxing Day
We headed over to Sladewyns for additional festivities, but things were tempered somewhat by the realisation that Sparky had liberated about 200g of really quite nice camembert from under our noses. Bastard. You were dressed as an elf throughout, which was downright adorable, obviously.

Concerned that we need to get you out in die frische Luft every day, we even did something on the spur of the moment yesterday - we bogged off to notorious dog hotspot and sandpit Exmouth, about an hours' drive away, to see how quickly one or all of us would have a nervous breakdown. Turns out, nobody did. The dog was completely overwhelmed, and you were rosy-cheeked and laughing all the way. We staggered home, ate leftovers and then your Mum ate some people, thanks to Vampyr, which is very good indeed. A hardcore-but-worthwhile daytrip.

We've pretty much hunkered down at home since, working our way through various supplies of chocolate, booze, cake and other resolution-smashers. I feel pretty good, physically, and psychologically, this little blog is a light in the dark sometimes. New Year tonight always brings back memories of Lucy, a little more so this year as this marks the 18th anniversary of her passing. I still miss her.

Alex’s Favourite Albums

This list is the one that I keep in my head, and I just spewed out fifty amazing albums that are important to me now, or informed my journey through music when I was a kid, really. The first single (ask your Mum) I ever bought was Creep by Radiohead, because of the guitar landing in the middle of it. I defy you not to like that one. The first time I heard the climax of Abbey Road I was on a train and gasped audibly at the sheer wit of it. Similarly, when I came back from a lunchbreak in 1999 with Discovery by Daft Punk on CD, it was a beautiful summer’s afternoon in Bournemouth, all the pretty girls were out in town and a friend described it as ‘sunshine pressed onto a plastic disc.’ He was right.

There are so many memories connected to these records. As I say, I’ll explain in the fullness of time, but my advice is to search out these records if you’re in any way drawn to them. There’s gold in them thar hills, son.

I’m not saying these are the best albums ever made, as such a distinction doesn’t make a lot of sense. One person’s freedom fighter is another’s terrorist, after all. No, these are just the albums, and I suppose, by extension, the groups or artists, that I really love. Every album on this list is vital for some reason. It may not be perfect - in fact, none of them are - but something about each of them makes them special and uniquely great in some way. I hope you listen to them and love them as much as I have, mate.

Lots of love, breathless excitement, sunny days and a lifetime of discovery,

Dad x

Reasons to be cheerful

Great news from my most recent checkup - Mr Cancer is still in retreat, and the specialists don't really know why. I do though - it's because my immune system rules, and I have you to fight for, young man. And fight for you I shall.

I am feeling better today than I have in weeks, and feel like you can bet on all sorts of Daddy-shaped memories now. A weight has, at last, been lifted.

You're also sitting up, and have been for a few weeks. You're into everything, and have now been real longer than you were imaginary. Well done, you. You are almost sleeping through (you get more sleep than Mummy or I, but that's fine), and you love your food. I have never seen anyone cast as many amorous glances at cauliflower and broccoli as you do, you massive wierdo legend.

'Tis nearly Christmas, and the house is a happy, forward-looking place today. This time next year, we may well be chatting about it.

Too negative by half: let's have a laugh

I feel much better today, so I thought I'd share a list of my favourite songs and artists that you should definitely check out. I might even expand this to, like, Dad's Top 50 Films' etc, because you might like them :) This list is ever-changing, and a mere sample of the stuff I like at the moment. Hope you enjoy it, and imagine me Dad-dancing to it up there somewhere. I assure you I will be.

https://open.spotify.com/user/alexjones46/playlist/5fdVEW1nrMQRmum27sRDdf?si=DpISgRqbRlCPfvr7ISeIXA

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On the unravelling

"Death must be so beautiful. To lie in the soft brown earth, with the grasses waving above one's head, and listen to silence. To have no yesterday, and no to-morrow. To forget time, to forget life, to be at peace."

—Oscar Wilde, The Canterville Ghost

"It is the secret of the world that all things subsist and do not die, but retire a little from sight and afterwards return again."

—Ralph Waldo Emerson

 Death is just another path, one that we all must take. The grey rain-curtain of this world rolls back, and all turns to silver glass, and then you see it."

—J.R.R. Tolkien, The Return of the King

"They say you die twice. One time when you stop breathing and a second time, a bit later on, when somebody says your name for the last time."

—Banksy

"Death is only the end if you assume the story is about you"

—Welcome to Night Vale

. "You'll drift apart, it's true, but you'll be out in the open, part of everything alive again."

—Philip Pullman, The Amber Spyglass

It's not here yet - today, I feel fine and dandy. I just liked these collections of words...

More moaning

Brain tumours are so dumb.

He sits there, burrowed into my mind, plotting my downfall. Months go by, during which my son is born (hurrah!) and I lose my job (boo!). I get  through four rounds of chemo pretty much unscathed, besides a bit of tiredness. 

About three months ago, I started to lose my sense of direction. Big crowds, especially those in places I’ve not been to before, begin to intimidate me. Nevertheless, I negotiate the Rolling Stones live in a big venue; I walk about two miles a day with the dog. I go to London purely for the honour of being made redundant in person, during which HR ask me ‘how little I could survive on’ by way of an opening gambit. Charmers to the last.

Then last week, stuff started to shift on me - my anti-seizure meds are up a bit, and holding, but I’m not as sprightly as I was. Walking to our local shop, once a nonchalant trot of about 10 minutes, now feels like an expedition that needs to be considered before it’s completed. But I am still, broadly speaking, OK. My research has also proven that wine is an effective deterrent to most ills.

We saw the mighty Jenner clan last week, which was and will always be a joy. Hope, were it a candle, would flicker at the slightest breeze, having brought from the dark by friends and family, and those I need. Some mornings I feel like I will be dust at Christmas; until recently, others made me forget anything is happening. But now, all mornings carry a reminder that I am finite, and that below the waterline, the ship is, slowly, sinking.

But I am not sunk yet. When I had my op in January I worried that I wouldn’t be able to play shit bass guitar again. I was right. Slowly though, I have been able to pick up the pieces and play. Initially, playing itself made me dizzy; too much coordination needed, too many inputs, too much data requiring processing. But today, 303 days after my op, I played as well as ever, nice and loud, for 90 minutes. 

This is significant, because if I could have my time again, I would throw myself into learning and playing music more vociferously than i did this time round. Listen to Miles Davis, or Coltrane, or The Roses, or Metallica, or any decent musicians, and what you can hear is the result of someone wanting to make noises that are great fun, or emotional shorthand for something else, with and for their best friends. 

Being in the same room as a bunch of people intent on creating something with you that wasn’t there seconds ago, and if you stopped, would cease to exist altogether, is actual fucking magic. It is a glimpse of the inner workings of the mind. It is the higher state - pure creativity, emotion, clarity, faculty and freedom. It is as close to telepathy as you can get with your clothes on. 

Music has power. It started a civil war in Yugoslavia, and helped to end the war in Europe. It can evoke untold suffering and limitless joy. It is the only thing that can stop a room in its tracks. Humans are driven by it, inspired by it, die for it, are, sometimes, even made thanks to the atmosphere it can generate.

So, to know that I can still command my fingers to hold my bass in such a way as to make a sound I recognise as music, when I was warned that my treatment might - perhaps should - have taken that away by now, is good to know. The reason I started this by saying that brain tumours are dumb? Mine stopped me playing for a year, right? I couldn’t play stood up, like I have since I was 17. In a revolutionary moment, I sat down, giving my brain a rest, as it didn’t have to deal with balance issues that have been increasing for a year or more. With all those issues stowed, I could play, properly, again. 

All I can say is, sometimes it’s best to sit on your arse. 

‘The worst tragedy that could ever happen to anyone, in my opinion, is that when they die, they never sang the song that was inside of them. They were never able to give their greatest gift away.” 

“But the beautiful opposite of that is that if you pass away and you know that you’ve sung your song - that you gave your gift - that’s the greatest accomplishment I could ever hope for anybody.’ - Flea

Trigger Warning: Eulogy

I have to plan these things, because I'm not going to be around forever, but I still feel I should warn you of content and themes that might be upsetting, were you to run across this without your Mum checking that it's OK to read first.

This is a draft [unfinished] version of the eulogy that I want Tim to read out at my funeral. A eulogy is a short speech or reading that crystallises your feelings about the person who's died, and highlights their best points - funny things they've said, fun times with their friends and loved ones. I cried a lot while writing it, and will do so again before it's finished, but that's OK. That just means I understand the importance of what I'm writing and how it could affect you. I'm sorry if you find this upsetting, but I'll share it anyway.

Hello.

It is I – Al.

Yup, I’m just temporarily commandeering this vehicle in order to blether some sacrilegious balderdash for your entertainment.

One of the ‘advantages’ of knowing you’re going is that you can plan this stuff, and, as unwitting vessels go, Timmo here is significantly cheaper than the New Orleans-style Jazz band I wanted, so, there you go. Austerity, innit.  Mr Mason, had you been sat nearer the front, I’d have chosen you, Sir. Sorry today wasn’t your turn - there’s always next time, though.

So, yeah.

Shit.

Dudes, I have in fact finally died (elegantly as ever, of course) and now, I use my new powers of haunting to gently come amongst you, one last time.

This means that The Event has happened. Turns out I lost, like anyone who plays the game, existence, to the end.

I have to apologise unreservedly to anyone who was saddened when it finally did occur. As I write this, on a classically Tupperware-grey August afternoon in 2018, my passing away seems faintly ludicrous, albeit technically plausible from a medical point of view, but I feel nothing, right now, today, that would give it away. Which, if anything, only goes to show that you shouldn’t take betting advice from me.

And I want you to know that on the way to this point, I had many, many days when I have felt like a fraud, not ill at all, but bored, and stuck, and becalmed, outwitted, outgunned and overwhelmed, furious, resigned, hopeless, empowered, focussed and strong as an ox. All at the same time, sometimes. But I’ve had terrifying days, long, scary nights and seizures that made me wish this day would come sooner, too.

Despite all that, I’m glad it didn’t.

Dying itself holds no fear. I am not afraid of anything apart from pain, and while I will have suffered intermittently while descending the escalator from full-on, maximum-annoyance Al to the useless pile of malfunctioning limbs I undoubtedly became, I was managed, helped, counselled, cheered up, dressed, hugged and wept over by beautiful souls who don’t get the praise they deserve.

Every pain can be managed, be it emotional, spiritual or physical. Please, if you have anything spare, reward those who helped me and give generously to the collection for the nurses and staff at XXX and XXX, without whom I would have not been able to slip quietly into the next room, as I undoubtedly did.

My darling Tam, you are the strongest person I’ve ever met, but I know you get bored of hearing that. Folks, my wife is beautiful, and resourceful, and clever, and brave, but she has been going through this with me, and now I implore you to look after her and Leo for me.

Call her once in a while. Ping her a ‘hey, how are you?’ now and again. She needs you to help put herself back together now. She will front-up and say she’s fine, but she might not be, and she shouldn’t have to be doing this on her own. Cancer is a cruel, merciless thing. Dealing with its immediate aftermath is worse for her than it was even for me. As my friends and family, I’m telling you now: she needs help for a little while. Please be that help if you can.

Tam, rather than concentrate on the situation that my departure creates, I hope you can see it, in time, as an opportunity. You can do anything now, and as long as you have a roof over your heads, a family that loves you and friends who can see how much of your heart you’re pouring out for Leo each day, you will be fine.

I am totally heartbroken that I won’t get to see us grow up together as a family; beyond all the travelling, the fun times, the drama and whatnot, that was what I wanted for my life. My only hope now is that I can provide a start for Leo, some solace for you and all my love. I don’t have anything else left to give. I’m so sorry darling.

Please show the rest of the world you’re as great as you know you can be, and teach Leo to love life and waIk forward from here unafraid. He is my son. His constellation, and your initial, are etched into my skin. We are one, but we’re not the same. We carry each other.

I am, if anything, proof that having outrageous eyebrows and a great walk will only get you so far in this world. Thankfully, that little boy also has your heart, your charisma and your endless compassion. Lift him up for me, and watch him take on the world for both of us.

I hate people who won’t try for fear of failing. One glance at the brilliant men who are my greatest friends in all the world proves that I don’t judge a book by its cover, and I like people who don’t mind a dash of risk here and there. Boys, thank you once again for all things. I couldn’t, wouldn’t and definitely shouldn’t have done it without you. Oh, and Jon – please employ your notoriously burly physique to ensure that Mr Browning gets a round in for everyone here before he goes. Ta.[1]

Knowing that I wasn’t going to be around forever, I dearly wanted to prove to Tam and Leo that I didn’t give it up and hide; I took the doctors’ advice, sure, but I didn’t sit and wait – or tried not to, anyway. I fought this thing that has ripped the heart out of my family three times in the last 20 years. I did not lie down.

I knew I couldn’t do anything to effect the outcome, so I did everything I could to effect the outcome. I ignored as many symptoms as I could, and carried on. I went back to work, so that I could leave more behind for Leo. I scoured photos and videos, compiling them before it was too late. I contacted people I dislike intensely and asked them for help. The saying ‘you could be hit by a bus tomorrow’ spurred me on; I knew the bus was coming – I could hear it in my head every morning when I woke.

In Summary

I have truly loved my life. I have seen some amazing places, met some extraordinary people, lived, loved, lost and won.

I have been myself, but better, as per my best friends’ advice.

I have shaken the hand of a great and powerful Wizard

I have had a biro nicked by Paul Weller. Word to the wise – never lend the Modfather a pen.

I have seen Oasis live in front of 130,000 people, and 130. More is better.

I have been a regular patron of Jason’s Doner Van.

I’ve fallen over because of the Rolling Stones.

I’ve seen Radiohead break hearts in the rain.

I’ve shared long-buried family secrets while being thoroughly underwhelmed by Bjork.

I always remembered the fate that befell Deano, as we all should.

My wife has been chatted up by Russell Brand, which puts her in the top three percent of the world’s women in my book.

I’ve been asked ‘Ire you happy?’ by a toothless Irishman.

I’ve discussed complex geopolitical challenges with strippers in Edinburgh at four in the morning.

I have met strange, mystical Australians on trains, with overly sparkly blue eyes, who may or may not have been angels or something. Either way, they loved Holden Caulfield even more than I did.

I have watched my beautiful, ‘untrainable’ dog hit 30mph on the beach in brilliant sunshine, before ambling back at his leisure to my side. Untrainable my arse.

I have been underrated and overlooked my whole life. Wonky eyes, a funny walk, a funny run, no sense of direction and a bit of shyness make Al a confusing prospect.

I have listened as unwise people told me my relationship with Tam wouldn’t last six months, and been told I didn’t have what it took to be a writer, because I couldn’t keep everything in my head. How am I doing so far, though?

I have married my favourite person, on the best day of my life, surrounded by literally all my favourite people.

I’ve worked in Asia, despite not liking work or, for that matter, Asia, all that much.

I kept a list of people I hate. Ask Jon for details.

I have played bass alongside the best drummer I have ever met.

I have held my newborn baby, and heard his first-ever cry.

I have done 0-60mph in under three seconds.

I have felt the gut-wrench of unrequited love.

I have been that irritating dick with a new girlfriend who things everything is made of candyfloss and trampolines.

I have had some truly bollocks haircuts, and a couple of great ones.

I have had my heart properly smashed to bits.

I’ve feuded with people and not made up with them, because life’s tough, and arseholes don’t get let off every week, like it’s the end of He-Man or something.

I have been betrayed by those close to me, but also forgiven by those close to me.

I have made peace with being a bit crap at a variety of things, such as driving, cricket, catch, guitar, singing, card tricks, fatherhood and baking.

Despite sitting opposite Rob for quarter of a century, I still don’t understand the Israel/Palestine beef, or why anyone would do live-action roleplay. That said, as you can see, I do indeed prefer a fiery death.

I’ve been given a chance to prove I’m better than I think I am – everyone deserves one of those in life.

I have seen Southampton stick six past Manchester United. Ha!

I have seen England win a penalty shootout.

I know what a 110-hour working week feels like, and as a direct result, I know what setting up camp at a swim-up bar in Mexico at 1030AM feels like, too. Work hard if you like, but play hard afterwards if you do.

Whenever I have distanced myself from my friends - verbally or geographically, I have come unstuck.

Whenever I have phoned it in, people knew.

Whenever I have tried my absolute hardest, I have surprised myself at my own ability, and more often than not, succeeded.

Rudeness is fun, but it's not useful. Forgiveness is classy.

If you're given a choice to do a hard thing or an easy thing always, do the difficult thing quickly, first, then do the easy thing at  your leisure.

Pop stars and famous people are not prophets. Don't waste your time listening to them. Listen to your family. Real people are just that.

I have suffered, and triumphed. I have laughed a lot, and cried a bit, too. I am OK with all of the above, really. Please don’t be sad. Thank you for being all the help I needed, and for aiding and abetting me as I did this thing we call life. I love you all. I’ll see you again. Now, go out and get whatever’s yours, before it’s too late. Go and be a puppet, a pauper, a pirate or a poet if you like, because time is short, and life is tough. I'm out of time, but you are not. Carpe fucking diem, people.

I thank you for this most amazing day, for the leaping greenly spirits of trees, and for the blue dream of sky and for everything which is natural, which is infinite, which is 'yes'.