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.
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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.

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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.