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.”


Uh oh…

12799368_10209233534864526_3878139118461604977_nA lovely day at Wembury where some of my gals took me for lunch and a gentle amble along towards the point. We failed at selfies as you can see. So many laughs, and lovely food. I also received a tiny manic fish, and my first ever pair of hand-knitted socks courtesy of S. Luxury.

I was lying on my bed, considering a nap and selecting the music from my iPhone, when the letters blurred. I thought it was the phone, but it’s most definitely me, and it’s in both eyes. I called 111 and got a call back from the out of hours GP within 20 minutes.

He says dexamethasone can cause cataracts, and in a short time, although this is really short. I also wonder how they could form in both eyes at the same instant, so I suspect it’s Hunt/swelling related. The other symptoms have reduced with the dexamethasone, so it’s a little worrying.

As I knew, there’s nothing anyone can do about what is simply one more of the list of symptoms associated with my condition, since the cure for the irritating Hunt and the associated swelling is surgery.

I can vaguely see what I’ve typed here, but I can’t really make out the letters on the keypad. Best get the voice recognition trained fast this evening.

My first thought was to look up blurred vision and research the steroid cataracts, but I can’t see well enough. That realisation that I can’t read is quite traumatic. My contact is mostly online, where I keep up with what’s going on. Radio 4 podcasts on random topics will have to do. I wonder whether this will ease once I’ve slept, but don’t want to hope.

If it doesn’t, and I manage to blog, it’ll be in one go and uncorrected so forgive the mistakes.


I think the visual blurring might be related to dexamethasone as I found it on the list of rarer side effects. I’ve found I can read better by looking at the screen from the left periphery of my vision, and with glasses on, .which looking straight ahead blur the writing more!

Anyone have any experience of similar side effects?


similar side effects?