Monday, 21 January 2013

The Good, the Mad and the Ugly

Yes, I'm alive, thanks… just a little late. I've been home since Friday: lighter another chunk of brain but feeling pretty well on it; missing some hair and with the baldy patch tracked with some brutal-looking sutures to meet this season's trendy freshly-vivisectioned look, but I was never that lovely anyway.

So that's the Good and the Ugly. As for the Mad… well, we'll come to that. It's been a hell of a week, and hospital was harder to deal with this time for a number of reasons. It's good to be back here on my couch, tired but relieved.

Last year I was blithely blogging from my bed on the evening of operation day, which allowed me a certain professional smugness - reporting live from the field of war, all that stuff - and this year I'd planned to do much the same. 

And I nearly did. Tuesday, the day the actual cutting took place, went pretty well. 

I had a decent enough night's sleep, and it wasn't any surprise that at 6.30am I was being ordered both into the shower and into a charming little surgical combo of toeless anti-DVT stockings, backless hospital pattern-printed mini-dress, and a pretty much everything-less pair of what are euphemistically referred to as "modesty pants", but which fulfil neither part of their name well (if it hadn't been for the leg-holes, I'd have been inclined to put them on my head, and while I realise a paper shower cap would be a useless garment, even when applied to the right end these weren't far behind… not the roomiest fit I've had, they really weren't far behind).

But that was all OK, because it meant things were underway, so with this brief adventure in medical cross-dressing and a quick email-check done, I was all set and greeting Clare, who'd come in just in time to catch me being wheeled away to the recovery room for pre-op prep, much earlier than I'd expected.

As with last year, I don't remember much after that; there was a brief chat with the anaesthetist, a wee shot of his wares, a bit of a sore arm, and then nothing for four or five hours, by which time I didn't seem to have so much as moved. Obviously I'd been in an operating theatre and had some very intricate squelchy things done in my head, but as far as I was concerned I was in the same place as before but the anaesthetist was telling me it was now 1.20pm.  Pretty soon I was back in my room and Clare was in again to see me. At some point I also spoke to one of the surgeons who told me that the operation had gone very well, they'd grabbed 98% of what they were aiming for, and that was a very good result.

So Tuesday was a fairly full day, what with coming round, a Facebook and Twitter announcement along the lines of "surgery over, still alive, both 'woo!' and, indeed, 'yay!'", dinner (5pm is a big event in hospital), another visiting session over the early evening, a decatheterisation (much less eventful than last year's) and subsequent return to my feet (and to using the proper loo, also a major deal). Busy, really, but I did start to blog. Then midnight knocked on, and despite feeling that I'd been rattling away for some time, I'd only written something in the region of 160 words (the fashion show stuff above, pretty much), and I was feeling tired, so I thought, "well, I've done my bit for now – best I finish this tomorrow when I can make a better job of it."

And that was the plan. 

Until Wednesday happened. And so to the Mad...

If anyone ever offers you a night of sleep deprivation while on a massive dose of dexamethasone, topped off with an anaesthetic hangover and a dihydrocodeine hair of the dog, don't take it. I mean, do what you will in the spirit of experimentation and all that, but I really don't recommend it.

By lunchtime, twitching with steroid paranoia after a morning of fractured sleep peppered with bits of nurse chat from the desk outside my door as they dealt with at least half a dozen other people's emergencies, I'd invented my own MRSA outbreak. I had enough logic still about me to realise that since they still appeared to be checking people in and out and letting other patients wander down to the canteen, we probably weren't all crawling with antibiotic-resistant superbugs. But I still had to ask, and felt much better once the nice, if slightly concerned, nurse confirmed I was probably hallucinating on dex; I'd had steroid anxiety before, after all, so I knew the feeling, it was just that the previous occasions had been at home, milder, on a much lower dose, and without also inventing a major crisis in a busy hospital.

Still, she was soothing, so by the time my parents came in to visit me mid-afternoon I'd calmed down properly, not perhaps to my most lucid, but enough for them to go home apparently happy that I was fine, if a bit understandably woozy. Which was good, because not so long after they'd left came the teatime terror.

Alone again once more, I was now onto full-blown anxiety. At least this time I'd invented no little conspiracies, but that only helped a bit. In every other way, this was much worse because the panic was just so much more intense, yet utterly groundless: just the raw emotion with no underlying cause. That's horrible, not least because it's illogical. How can you tell yourself not to worry about something if there's nothing you're worried about?

Then the nice nurse came in to ask me how I felt.

Seconds after my slightly higher-pitched than normal response, "utterly and unaccountably anxious and tense", and possibly on sight of my white-knuckled grip of the sheets, she was on the edge of the bed gently listening to me explaining as measuredly as possible the unfounded nature of this blind, screaming panic, and that I knew it was the dex, but I couldn't bring myself down from it. Some more soothing words and a phonecall for pharmaceutical advice ensued, and diazepam appeared. And that, more or less, was that.

By the time Clare visited at 6.30pm, I was fine. Still a bit twitchy (although she says I looked like I'd had a terrible shock), but pleased to see her and feeling all right. Still, I didn't blog that day. It should be an internet rule – don't post while drunk, and don't blog while bonkers. It's for the best.

After a cut in my dex prescription, another wee diazepam around midnight and a unilateral decision from me that my choice of painkiller would from then be paracetamol rather than the DF118s (as dihydrocodeine is apparently known to the aficionado) which I felt were impairing my logic, I discovered that I could also now lie more-or-less flat without twanging the wound, and I had a great night's sleep.

By Thursday, I felt fine. It was a good day. Friday was better because they let me home a day earlier than expected. And I've felt pretty good since then too, thanks. The staples itch a bit, but I've had a pleasant, if inactive, weekend.

So you're getting this blog post now, in my own good time. Sorry, but there you go.

Anyway, thanks for all your kind messages of support; they're always appreciated, as are all comments left below.

And Happy Monday! I'm having one.

Remember, if you do want to follow me on twitter, look for @G_N_S

Monday, 14 January 2013

Here I go again...

So here I am once more… in hospital, awaiting surgery.

I've been here in the Southern General since this morning, during which time I've spoken to a couple of surgeons, an anaesthetist and at least one another doctor, and I've been scanned, examined, weighed (that was a bit scary) and had blood tests done.

Most of the time has just been spent sitting around, though. That's pretty much all I need to do, now.

Until the morning, when they'll be cutting my head open again.

That should go pretty much like last year. I won't be allowed to eat or drink from about midnight, and at some point in the morning I will be chemically knocked out and the cutting will commence. All I remember of last year's adventure is being taken to a prep room, having a needle put into my arm, told that the coming injection might be cold and a little painful, and then thinking, "oh, yes, that is a bit chilly… and a bit sore… actually, it's really becoming quite…" and then knowing nothing until four or five hours later when I woke up to see a nice man offering me morphine.

I'm expecting much the same this time. They'll be going in though the same hole, and ideally the same wound, too, so that's nice. No more bone cutting, all going well: just slice their way in through the scar, pop off the titanium plates or clips which are holding in the piece of skull which was jigsawed out a year ago, and commence the cerebral scrape. The aim is to get out as much new tumoury stuff as they can, ideally but not necessarily all of it, tidy round, get out and lock up. Last year I was back on my feet in hours (that delay mainly because I was still plumbed into a bag, and it's not really very amazing at all how that restricts your mobility) and I'm hoping for the same again.

I'm not getting to take part in the PARP inhibitor trial, as it turns out. Because of the procedures that govern medical trials there would have been a delay of perhaps six weeks to let me join that, and no-one, including me, seemed entirely happy with waiting that long before the scrape-out. So I'll miss the chance to help out with a science project, and be deprived of the comedic value of its name. But, never mind, I'll go for a Chinese meal when I get out and have prawn balls and squid rings instead. Even at 44, that still cheers me up.

Anyway, it was only a trial. The only people who really lose out are those running it, and they're my doctors and seemed pretty keen that I didn't wait. True, they lose some data, but there will  be more. From my perspective… well I'd liked to have helped, and it might have been a wee extra which might have helped me too, but it equally might have made no difference to me at all, and I probably wouldn't have known one way or the other. I'll get the gold standard treatment regardless – and that's tried and tested.

So now it's just after 9.30pm, I've just had some toast, I'm sipping a coffee, and that will probably be the last I'll have before the midnight fast. Apart from the fact that the hospital will ensure I stick to that, I wouldn't break it anyway – I've no desire to throw up into my own lungs while under anaesthetic.

After I've finished my coffee and this blog entry, I just have to wait, and later try to get some sleep. True, I'm a little anxious – after all, they are going to open my skull again, and they have really whacked up my dexamethasone pre-operation, which might not help in that respect – but I usually sleep well and I really have no reason to be concerned, so I'm not going to be. After all, I'm getting some of the best care in the world here.

The risks of second time surgery are higher than the first time in, but only very slightly. My attitude is that I've done all this before – and coped very well.

So, as Whitesnake sang, "Here I go again", except I plan to do it with less ridiculous hair. That's including after they've shaved up the right side of my head.

I should be going in mid-morning sometime, and that means I'll be awake for or during afternoon visiting hours and can come round to see Clare.

I'm looking forward to that.

Saturday, 5 January 2013

Dex, more drugs, another hole…

Well, the same hole, really. It now seems the osseous trapdoor in the side of my head will be swung open once more to let some crack medical stormtroopers flush out some recalcitrant cells which have grown back after last year's drubbing.

Oddly enough, I feel pretty good about this.

It's not just the mood-enhancing effects of the dexamethasone (my steroid of choice). I'm over that now. But since I found out on Christmas Eve that this year's pressie was some new tumour (next year, a card will be fine, thanks) I've been aware there were different ways forward from this. Now, since I went back to the Beatson on Hogmanay for a long chat with one of my oncologists, it seems I'm in line for the best one. That's very encouraging.

The best route, it seems, would be surgery to hook out the new growth, preceded and followed by a new drug the Beatson is trialling (called a PARP inhibitor, which is funny in itself) plus a slightly different regime of the same chemo, Temozolomide.

This seems to be best because the bad stuff gets scraped out, the chemo is the kind I coped with well last year, but I get it for longer, and I get to do another medical trial, which won't interfere with the standard treatment but might well enhance it. PARP inhibitors have been used successfully against other cancers, and they've now proven that they can get into glioblastoma (something many drugs apparently find difficult) and the oncologists are "very excited" that they can do so effectively. I'll be one of the first to find out if they're right.

There is a big part of me which looks at stuff like this and breathes, "Oooh! Science!". When people with "ologist" in their job titles tell me they're "very excited" about a treatment I might get, I do have to slow myself down to make sure I read all the paperwork before signing it. It's not my fault, I'm a geek.

But, having done that now, the route it appears I'm likely to follow seems to be the best available. The trial might help me, but even if it doesn't, I still get the gold standard treatment and the data it provides should help others. Since I need treatment anyway, it's hard to see the downside.

Look at Cancer Research UK's new TV ad: Cancer has an enemy – research. (Oh aye, and me – and ye're pure claimed, ya malignant wee neoplasm, ye.)

So, yes, I am embracing the combatant metaphor pretty whole-heartedly: "Research has beaten polio, research has beaten smallpox, research is beating HIV. And, one day, research will beat cancer."

The other reason I felt so much better on leaving the Beatson on Monday was the length of time they took to explain it all to me. Despite it being Hogmanay, and despite the fact that he was undoubtedly busy, the oncologist took great care to explain as much of the detail and implications of what I'm facing to me, and to answer all the questions Clare and I had. Even when I pulled out my notebook full of them. Information is all, and that kind of care and attention from highly-trained specialists makes it all so much easier.

Next week I get a similar session with the neurosurgeon who will be going in (assuming he agrees to, and it looks like he's keen). I don't know the exact day yet, but I'll let you know how that goes. Then there will be scans, blood tests, a chest x-ray – all stuff I've had before – and a further clinic with the oncologists. Once that's all sorted out and everything's as hoped-for, we can get a date fixed and the cutting starts. Should be sometime this month. But, again, I've had brain surgery before, I remained a smart-arse, and I was back on my feet in hours. Sure, I'll be in hospital for a few days after that just to make sure I'm OK and nothing's running out my ears, but that's a good place to be in the circumstances – it's where all the doctors are, for one thing.

So I don't expect 2013 to be a particularly easy year. I'll be off work for a few weeks post-surgery, and the chemo is a bit debilitating, but that's mainly just fatigue, and I've coped with that pretty well in the past. I avoided the other major side-effect, which is nausea, and I imagine I'll do so again. But there's no radiotherapy to take this time since I've already had my maximum 60 gray (a gray being the SI unit of absorbed radiation, which doesn't come in shades and has nothing to do with handcuffs, and anyway, you get ten more) and that was the biggest exhauster. It shouldn't be any worse than 2012, and I dealt with that. Never bothered to read 50 Shades, though – life's really too short.

Right now I feel strong, healthy, and optimistic. There's good science out there to help me feel that way as much as possible.

So let's go.

If you'd like to help, please give a donation to the Beatson via my JustGiving page (there's also a puff you can click on at the top left of this blog). Or why not give something to Cancer Research UK and be cancer's enemy, too?