The glaucoma (occasional) diaries

This is NOT going to turn into a blog about my health. There’s nothing wrong with bloggers charting their health; many are very brave and interesting people and when you have mental or physical health issues you have to get through them however works best for you. But this is my books and writing blog!

That said, last week I had very kind responses with requests for an update, so here goes. And you never know, an occasional diary of glaucomatous events may help with notes for novel four. (“Don’t forget me!” squeaks novel three.)

I have nothing but praise for the skill and kindness of the medics and nurses at Moorfields Eye Hospital in London. It’s early days and I’m finding in a strange way that I’m much more preoccupied with the day to day unrolling of the treatment than with whether the eventual desirable outcome is reached (which is to retain and protect my remaining right eye vision before it goes the way of the rest).

Glaucoma fields test
This is a “fields test” on my right eye, last December. The black sections are vision lost to glaucoma. The treatment involves trying to stabilise pressure behind the eye to halt or slow any further loss.

First Dr K answered a simple question I could have asked weeks ago but didn’t dare. Turns out a “bleb” isn’t a bit of medical equipment/foreign body/object/weird plastic thing the size of a Macdonalds toy as I’d assumed. It’s a drainage flap cut directly in me. Curiously, when he explained this he was so matter of fact about it I didn’t mind at all.

Go figure –  Dr K (I’d name him in dispatches but will ask his permission at the next appointment) cut and stitched the inside of my eyelid. He had no computer guide or laser tech magic; he did it by hand. At follow up appointments he adjusts the stitches by pressing/pushing lightly on the eyelid, to alter the pressure of fluid on the eye, much as you’d adjust gathers in a curtain. I had a general anaesthetic but since that wore off I have felt no pain and minimal intrusion from the stitches.

If you’re looking for a quiet relaxing thing to do in the frenetic City of London on a midweek afternoon, you can’t beat a well judged general anaesthetic. Sure, I was a bit hungry after fasting since 7am, so while waiting to go in I’d described all the things I’d like to eat. Anticipating a post GA sore throat, I conjured up smoothies, yoghurt, jelly, juice. I asked for dried apricots and prunes – lying around all day might slow things down. I’d satisfy my energy needs with pasta salad with mozzarella, take sundried tomatoes and dark green leaves for iron, and a flapjack or cereal bar just in case. Plus grapes because after all I was a patient. I was just passing the time but in the hotel room that night I found: a bright orange smoothie and one called Blue Machine, honey yoghurt, mandarin jelly with fruit slices, apple juice, dried apricots, prunes, pasta salad with pine nuts, more pasta salad with roasted vegetables, olives, sundried tomatoes with mozzarella balls, rocket and watercress, strawberries, grapes, an oat flapjack, a cereal bar, and some camomile tea. As it turned out the anaesthetist’s skill had avoided a sore throat and I was more sleepy than hungry. Fortunately B always has an appetite, and we hope the cleaners enjoyed the things we left in the morning when we couldn’t manage them after the hotel breakfast.

Glaucoma sunglasses
Which would you choose?

The operated eye is bloodshot at levels Boris Karloff would envy, which offsets my blue irises brighter than any coloured contact lens. My glasses prescription no longer fits and I find glare difficult. A kind friend who gives a lot of parties brought round all the sunglasses people left in his house and didn’t collect, which helps, although it further complicates the issue of whether anyone has seen my glasses. I have a plastic eye shield to wear in bed in case I scratch the wound, and over the next three months over 600 doses of eyedrop, antibiotic or anti inflammatory to take. Have filled the prescriptions asap (did you hear about Brexit and the medicine shortages?)

But it’s only a week later, and I can now read several pages without tiring (Shirley Jackson, must tell you about her another time). I can report that the general anaesthetic did wonders for my back! Today is the first day back at the computer without discomfort which is just as well as I have six posts to write, for a Magic Carpet blog tour and some other commitments I made. The cure for any sad carpet is a good airing, aka publicity. The Magic Carpet is earthbound after its initial flurry. If it had sails, I’d say the wind was out of them, despite recent puffs from some excellent reviews for which I’m very grateful. So friends – if you’re nearby please visit (I’m still a bit wary of outings that might get dust and pollution in my eye). And if you can do anything to help The Magic Carpet weave its way further up the contemporary fiction charts at Amazon, I’d appreciate it as much as any bunch of grapes.

 

Glaucoma meds
…and that’s just one of the meds. Hooray for the NHS!

©Jessica Norrie 2019

With an eye to the future

Three weeks after The Magic Carpet was published, the book is doing well and its author is booked for a trabeculectomy operation at London’s Moorfields eye hospital. A “trab”, as we carelessly throw the name about in these parts, involves inserting a small bleb (shunt, drain, thing) under the upper eyelid to relieve pressure of fluid on the eye, which in my case is causing significant sight loss. If successful, they’ll do the other eye in a few months. Just a trab. If you say it really fast you can almost forget it’s happening.

I have been in a right tizz about this for months. I joined an online forum and retreated in terror at the horror stories they told. A calm and gentle person at the International Glaucoma Association pointed out that people for whom things go wrong will always be more likely to post than those for whom all runs smoothly, and that my highly respected  surgeon Mr Gazzard is at the cutting edge (no, she used a more fortunate term than that).

But today I’m fairly calm, if you can be calm when filled with adrenalin, fresh mango scrambled eggs and toast that came out exactly right for once, and two carefully measured cups of tea all finished and washed up by 6.59am. I got up early for what I call the condemned woman’s breakfast before my enforced fast. The term makes my partner wince – gallows humour is not something we share.

Glaucoma
This week’s recommended reading

I wasn’t going to mention any of this on the blog at all, or at least not until afterwards, as it all seems a bit private and not much to do with books which is what the blog is supposed to concern itself with. But now I’m finding it’s a good way of passing a long coffeeless lunchless morning. Next I’ll wash my hair as thoroughly as I can (no bending forwards or getting eyes wet for 4-8 weeks), and pack my overnight bag as we’re staying in a cheap chain hotel near the hospital because this will be day surgery (note: others will be in the house). I was initially offered an overnight room in the patients’ hostel, as I’ll have blurred vision in one eye and a patch over the other, be recovering from a GA, and have to be seen in clinic the following day anyway. Then the local council fire inspectors came along and condemned the building, so the Holiday Inn will be cleaner than the tube (advised not to use public transport) and cheaper than a taxi back to the suburbs from central London. It will be reassuring to be close to their A and E dept but we won’t use the swimming pool, the bar, or the amenities of famously cool, stinkingly trendy Shoreditch. (I do wish our hellish government would retreat from stupid Brexit and fund the NHS instead. I know the staff will be skilled and kind, and the clinical care will be excellent, but I’ve discovered before that it comes utterly without frills. And don’t say what do I expect for free – I’ve paid a lifetime’s National Insurance and tax for the NHS and I’ve never abused it the way certain politicians do.)

When I start ranting I know it’s time for that hair wash. Excuse this post if less carefully edited than usual – it was a bit of an afterthought / timefiller / timewaster / distraction / delete as applicable. And if no other chance comes, huge thanks in advance to staff at Moorfields Eye Hospital and to my optician who originally diagnosed this thing – GET YOURSELVES TESTED FOLKS! To that end, please share this post as you think fit. Must remember to take the nail varnish off! See you – a bit fuzzy perhaps – on the other side!

©Jessica Norrie 2019

Has anyone seen my glasses?

On a creative writing course that I describe here, we were asked to write about a precious object, a talisman. Some people chose jewellery  – one had a wonderful wedding ring, full of mystery, that she’d bought (they’d bought) on eBay! But my Talisman is my glasses.

tartan galsses

I have worn glasses since I was 16. At first I tried to avoid them, shamefacedly extracting them from my bag to check the bus number as it approached the stop. Later I had to put them on more, and now almost all the time. Instinctively, I usually remove them when eating. And also since getting an electric toothbrush, as I spatter them with Colgate, and I’m not the sort of person who can ever lay their hands on any of that special lens cleaner that organised spectacleers have.

Without my glasses my world would be less and yet over the years I have made my glasses less too. My statement style shouted “Here I Am!” in the 1980s: I had stripy frames and bright pink frames and lenses like the dog with waterwheel eyes in the Hans Anderson fairy tale. But now they’re inconspicuous. I don’t want to feel them on my nose ridging the skin red and sore; I don’t want them hiding my eye colour, my lashes (which due to the side effects of some medication are growing! Bat, flutter, bat flutter – a bit grotesque but funny too.) I want my expression to be visible. No dissimulation nowadays, no false confidence. What YOU see is what you get.mumand ros with glassesMy all singing, all dancing varifocal’d shatter proof surface protected lightweight tinted lenses darken in the sun, which is when my expression does become impenetrable. A school child told me my dark glasses make me look like a detective and I like that, for they do enable me to see what’s afoot. Add a trench coat and a pipe and I’d be set to go.

peacock glasses 2In our house we don’t shout goodbye when we leave for work or study in the morning. Instead the last I hear from my “children” (they are so grown-up and so much taller than I am) is: “Your glasses are on the piano / your glasses are in the bathroom,” or simply: “Fruit bowl!” If they don’t call I am lost, for without my glasses on I cannot find my glasses. Now, oddly, I can find no photos of me wearing them with which to illustrate this post. Perhaps I’m as vain as this peacock.

Two years ago I was diagnosed with glaucoma in both eyes at exactly the same age as my mother before me. She went blind. Treatments have moved on and I shall probably not go blind (although at the rate my eyelashes are going they may soon screen the world) but it was a sign of ageing, a pointer to depression and suddenly I became aware of how sight based my day is. I wake and look around the messy room in dismay; I read a book; I browse my bloody phone; I read my emails; I wander to the shops (or drive); inspect the garden, and if the gods of fate are on my side I write some prose using a screen. How without sight will I find new ways to see?

Fruit bowl with glasses