Blurred

The blurred vision that hit me yesterday evening really did hit me. I tried to be calm, to contextualise it, but the realisation that such a thing could happen led to a kind of bleakness, especially because I couldn’t get on google and research it.

After dinner, I washed my face, and noticed I have eyebags that are protruding over 1cm, which started me thinking more about the steroids as a cause. By 9 I’d worked out how to see enough to read, and as I posted in a PS, blurred vision is on the list of side effects for dexamethasone – as is, rarely, breathlessness which has worsened recently as I said.

I can’t go with the cataracts, since it’s so soon and it developed in a flash, in both eyes (although I suppose it might have started in one, and the other compensated, till that went too).

I might suspect Hunt if it were in one eye, perhaps, but he’s in the wrong place for that unless generalised swelling were responsible. Over the past couple of weeks, though, the signs and symptoms associated with that swelling have improved steadily to the point where I know the steroids are working, so that doesn’t fit. So I feel calmer this morning, but the magnitude of the whole is encroaching on me by degrees and leaps as the dragging wait for surgery continues.

Back to that brain thing again, so many possible consequences for so many areas of my life, so that I’m back to bargaining (with whom? I don’t know) between preferable, tolerable and no way. I have a bloody good chance at least initially of recovering, but of course there are risks, and then there’s the whole cancer thing, and the effects of the treatment which can be permanent.

On a positive note, I’ve experimented with the ondansetron and it’s marvellous. I take 4mg about 15 minutes before breakfast and steroids, then again before lunch, and before dinner. If I take them twice a day as suggested, lunch is hard particularly because the second steroid dose is at one, and I most certainly need ondansetron for that. I forgot the dinner ondansetron last eve, what with everything else, and felt suddenly and dramatically nauseous at 9 till I popped the last pill of the day.

The saga of the Ms issue returned on Saturday; the final forms from the DWP arrived, following that tussle with the DWP advisor over the legality of a woman wishing to be addressed as ‘Ms’.  Under ‘title’, it says ‘Miss’. I’ve crossed it out, over-emphatically, in black biro and replaced it with and inch-high ‘MS‘. Take that DWP advisor! And I trust it won’t result in a delay to my benefits. I’m in no mood to compromise.

A final comment from my Mum, Jenny:

“Now don’t forget to take notes on all this, I’d say you’re sub-standard mentally and you’ll forget.”

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Sick

One of the more subtle symptoms of my brain tumour is a vague, intermittent nausea. It’s one of those feelings I’ve been able to ignore perhaps because it’s not that troubling, and I’m used to GI symptoms.

The nausea worsened with steroids which are pretty irritating to the gut and my GP Dr H prescribed domperidone to help alleviate it a couple of days after the diagnosis. That helped, and enabled me to eat more which in turn made me feel better, certainly later in the day once the steroid doses were done.

But in the past two or three days the nausea has worsened considerably, from a slight annoyance to something more; for most of the day I’ve grown an acid gremlin that sits in the pit of my stomach and threatens to shoot. It’s not reflux, and eating doesn’t help. This afternoon I thought I might actually vomit if I laid down.

The duty GP at my surgery is Dr E, a man I know and like very much, partly because I’ve seen him a few times in recent months with my various troubles during which he has been excellent; he also works for the out of hours GP service locally. On the occasions when I’ve called him regarding a patient – one of which was especially complex and and involved an extremely upsetting mental health crisis where as ever we had no access to specialist resources – he has been unfailing in his willingness and ability to sort the most intractable situations.

Dr E had called me within 20 minutes, at 4.45 on a Friday, which was the point where I realised the domperidone was no longer working and that I have another weekend to get through. We discussed the options. His solution is to hit it with the big guns, because as he says, the point is to alleviate the symptoms for this period until I undergo surgery. So, within an hour my brother Dave has collected Ondansetron from the pharmacy.

It’s the first truly effective, multi-purpose anti-emetic that paramedics here were authorised to administer, and I have used it in a number of situations to great effect. I’m to take it prophylactically – with the aim of preventing nausea rather than treating it – starting with 4mg twice a day, with the option to double either or both doses.

Another  big up for our NHS.

Mirror, mirror

IMG_2694The pillow’s kind of in the way, but I doze off for half an hour. My face feels squashed somehow. I wake to find I’m prodding some padding beneath my cheekbones, and have ditched the pillow. In the mirror is a harvest moon, where once was my face.

Ten years younger, lines plumped out.  People pay a fortune to look like this. I peer into the speckled glass.

Mirror mirror on the wall, whose is the fairest face of all?

I prod and note the bulges beneath my eyes and the pads filling what was once the gap between cheekbones and jaw. Ah, the jaw. There’s a chin there, but on either side hang rococo swags. A further, more generous arc of whatever this is curves and wobbles like an oedematous granny in a hammock slung between the angles of my jaw.

The whole is coloured in a spectacularly healthy-looking windburn shade of the type sported by mountaineers striding over crags. No fading Victorian maid for me then, no romantic drape of wan helplessness across a velvet chaise longue (Mum actually has one of these which I had been planning to put to good use later on).

J and A arrive; “Don’t you look well!”

Bloody steroids.

We head off for a walk down the Walkham, me wobbling slightly but feeling quite good, were it not for the nausea that keeps returning today and the Hunt headache. I wonder whether it’s related to biscuit consumption, which has, in the past couple of days, been high. I decide to avoid sugar for a bit, it’s certainly not a good idea to OD on it with steroids. But it’s so comforting.

Bun fossicks in the woodland and swims with J & A in a gorgeous, green-tinged river pool. This one features a chalybeate spring, where iron colours the otherwise palest blue-grey rocks a dramatic rusty red. I examine the spring, and the tumorous galls on a sapling rooted next to it, feeling a connection. I’d love to leap into those lush bubbles, but the chill of winter river temperatures (perhaps between 5 and 7 degrees) is hard to counter when you can’t forge through in a strong and warming way. Plus, I’d most likely have emerged looking like Adam Walker.

IMG_2704

Roid revs

I was on 8mg of Dexamethasone twice a day till yesterday, when the dose was halved. Steroids a good things when, like me, you have a swollen brain; they’ve eased my headache considerably, and lessened some of the deficits – in particular the dropping and smashing of more or less anything I tried to pick up or carry.

Steroids are produced by your body naturally, and I would sometimes encounter a patient with an insufficiency. Any stress on the body whether from illness, or trauma, or emotion rapidly becomes a medical emergency for these people because steroids are a part of the chain reaction, also involving adrenaline, in your body’s fight or flight response.  It’s the steroid that causes glucose to be released into the blood to fuel the raised heart rate and increased blood flow to the muscles ready for action. If you’re deficient in any part of the chain of hormones in this process, you cannot respond to stress and you die unless you receive steroids artificially.

The effect of steroids then is pretty dramatic I take them at 8am and 1pm and for a couple of hours afterwards I’m wired, but not in a nice way. They’re stress hormones.

My Mum has a little Suzuki Jimny, which lives in her garage at the bottom of a steep driveway. She is very small, and moves like a rocket, hurling herself at everything. I feel like the Jimny revving up on a flight or fight up the driveway.