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

Losing the plot

Six weeks ago I was in Japan, loving it so much I thought I could teach English there if I ran low on funds. I also have plans for Iceland, Cuba, India, Sri Lanka….

On Wednesday 2nd Nov, my horizons narrow. It’s a beautiful autumn day. Trees glow, low sun brushes everything gold. I drive to Epping Forest for a walk. The forest is almost luminous on this shining day. Most trees still have most leaves, but there’s already a crisp carpet of brown, red and yellow on the forest floor. Shuffling through is as fun now as it was in childhood, but we walk fast: it’s only 10am and the temperature is invigorating.

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Connaught Water, Epping Forest. Photo by Nikkii Barnett.

It’s the end of the year but the springtime of my ideas: the novel to which I’ve been doggedly adding 1000 words a day for the past month is taking good shape. Striking details and major plot threads form in my mind as I pace along the paths. Part of me can’t wait to get home and start putting them down – black for phrases to be added to my draft, red for ideas to be developed later.

Under the coating of leaves my foot hits a stump and over I swoop in an arc too fast to correct. My chin and nose make contact with the wooden edge of a footbridge and I’m sitting dazed on the floor with blood pouring from my mouth and nostrils. People pass tissues, but my shaking hands drop them on the dirt and others are soaked immediately. A lady with a pushchair offers baby wipes which sting my mouth clean. Somebody strokes my back, moaning “Oh Lord, oh my dear Lord“.

Behind me: “You’ll be on soup for the next few days, Jessica!” and “I knew a woman who fell that way and cracked a rib.” (OH Lord, oh my dear Lo…ord.) A third: “You need to sit in a long hot bath.” I love long hot baths but I think if I sat in one now I might faint and never get out.

I’m pulled to my feet and it feels more normal to be vertical. As I walk shakily along I only want to look at the ground. I’m aware of people staring but if I concentrate on small talk with my kind companion – who turns out to have been battling serious illness, bless her – then I’ll get back to the car park for the next decision.

Meanwhile I think, if I could get ice on this now….oh goodness what does my face look like..have I broken my nose? is that tooth in the right place? have I bitten through my lip? Blood drips on the top I bought at Tokyo airport (why am I wearing that?) I drive home followed by a volunteer, cautious as on my test.

I make hot sweet tea but can’t fit my lips round the mug. The wine sleeve I find in the freezer and hold against my face warms too fast (no wonder the Chablis is never cold enough). I try a huge packet of frozen peas wrapped in a tea towel and the immediate numbness is a swipe of relief. I want to be left alone to mourn my face, the ruin of my day and all those ideas for the novel that seem to have trickled away with the lost blood. I lie with another old towel to protect the new cushions of the new sofa in the sunlit bay window in blissful agony enjoying the quiet hiatus.

B. arrives. He can’t believe our local hospital.What a maze of potholed paths, temporary huts, hulking arches, the derelict nurses home sulking in a corner. It was boarded up at least ten years ago. Somewhere in the mess is A & E, though it’s not where it was last time I visited, with my teenage son after he was mugged, and that location was different to the time before, when as a toddler he stuck a bead up his nose.

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At poor beleaguered Whipps Cross pedestrians have to watch their footing and the buildings have always looked sinister. But the staff delivered my children safely and have always come through in an emergency, despite funding that always goes elsewhere, reports of submerged morale, closure threats that ebb and flow and an ever increasing  patient pool.

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The nurses’ home

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At reception they say: “Gosh, you’ve made a mess of yourself!” which is gratifying as it means we’re not time wasters.I’m number 297; it’s midday and crowded. Most people are patient (sorry) and quiet. A couple with a two year old give her juice and crisps which she spills on the floor. She gathers them up with care and returns them to the packet. She is noisy, through boredom. They look at their phones and erupt about the wait: “For fuck’s sake!”

I’m called in. “How are you?” Well, obviously, I’ve been better. I’ll need stitches, preceded by the same injections given before Botox. Now I know for sure I’ll never have Botox: they’re as unpleasant as I was warned they’d be. I grip the metal bar of the couch and squirm and the surgeon who is kind but brisk says, Well done, well done.

Eat sweet cereal for glucose, she says. Then sleep. Don’t clean your teeth. Use a salt water rinse even if it stings. Oh, you’d better have a tetanus jab. I stand as though I’ve been punished in a corner of the empty room waiting for the nurse with the jab. I’m so cold I can’t control my shivers. See your dentist, they say. As we leave, about 2pm,  they call number 430.

whipps-a-e
A & E

Thursday. I haven’t looked in the mirror yet. The ends of my hair are stuck together with blood but I don’t try washing it. I make tea and drink it lukewarm through a straw. I’m still cold. The dentist says I’m lucky – no nerve damage, no tooth damage and I could easily have cracked my jaw. I hide at home for the rest of the day dozing and watching Andy Murray’s downs and ups in Paris.

Friday. I sell my ticket for “The Nose” at Covent Garden. I have my own nose story, it’s pale grey and swollen. I pass time meandering round facebook and the internet. Somebody posts she can’t get down to writing her blog post and I challenge us both to finish one by 5pm. Getting it done feels like a step back to normality.

Saturday. I wash my hair! I clean my teeth! I’m tired and triumphant but it’s still only 10am. A nurse friend comes for coffee and advises Vaseline which makes my dry cracked mouth much better. My nose and cheekbones are yellow. B. takes me to South London for a change of scene and I watch a firework display from his top window. We eat very tender boeuf bourguignon and I try a small glass of wine. The food is delicious but the numbness the wine brings doesn’t feel right. I fear doing something clumsy to my stitches without noticing.

whipps-medicationSunday. A walk round the streets, hood pulled low. How awful if anyone thinks B.’s done this to me. On return my skin feels taut but he says it’s just the cold wind. A high point of Sunday is coming home on the Woolwich Ferry, not the horrible Blackwall Tunnel. We sit in the queue and contemplate the lights over the Thames. It’s a far cry from our night walk along the river in Kyoto. I sneeze several times and am perversely disappointed to find it doesn’t result in bleeding or particular pain.

Monday. My French pupil comes, a retired gentleman with a house in France. He doesn’t realise I have stitches until I tell him, so the wound must be looking better. But after teaching I lie on the sunlit sofa under a blanket and sleep for two hours. My nose is dark grey today but the bruise is smaller. In the local shop I don’t make eye contact with anyone. I’m ashamed of my battered face and cross with the beautiful autumn forest for betraying me when I just wanted exercise and fresh air. When did I last look at my novel?

Tuesday. My nose and left cheek are yellow again but the black gash on my lips is smaller.  I return unharmed from a daring long walk for a newspaper.Outside the world is worrying: Trump? Not Trump, surely. I decide to see if I can remember the ideas I had for the novel, and open the file for the first time for a week. But I’ve lost the plot, somewhere in the forest among the blood and the golden leaves.

Wednesday. Stop press: plot retrieved courtesy of Donald Trump. The horror of his triumph sends me back to the novel, because in it I’ve put people from different races, religions and belief systems living, learning and working together. Someone said this morning the only thing to do now is, each in our own way, to speak out against his values. What’s Trump done for me? Well, he’s directed me back to the outside world and he’s made me realise there are more serious matters than my face. Which in any case is almost back to normal now, thanks to the efficiency of the staff of poor old Whipps Cross hospital and the dentist. Thank you, NHS, and thanks to those decent politicians who created it.

whipps-is-old
The proud Victorian arches are still beautiful in a sinister way.

© Jessica Norrie 2016