Last week, I realised that it was exactly 38 years since my father had his first of three subarachnoid brain haemorrhages. He was 38 years old.
This has been the first anniversary of Dad’s first haemorrhage without Mum which is maybe why I’m writing about it now. I’ve also been scanning a lot of photos from my Mum’s collection which is helping piece together some of the puzzle.
The soothsayer in Shakespeare’s play Julius Caesar warned the Roman emperor about the 15th of March, “Beware the Ides of March”. It’s a phrase that took on a very real meaning for our family.
On Tuesday 15 March 1983, my father Keith Saunders was in his birthplace of Nottingham to deliver the 1982/83 IEE Faraday lecture The Photon Connection about how fibre optics (light) would revolutionise communications. Shortly after he had stepped off the stage in Nottingham (I think it was at the Royal Concert Hall) he was giving an interview to the BBC about the lecture tour when he suddenly felt very ill. He turned, vomited and collapsed onto the floor. (I’ve often thought, somewhere, at some point, the BBC had footage of my dad vomiting!)
It had begun as an ordinary Tuesday in March but one that changed all of our lives forever.
Earlier this year I decided to blog more honestly about what’s really going on in my life and in my head.I haven’t done much of that, although I’ve wanted to. The reason is this has been, in many ways, the hardest year of my life both physically and emotionally. It culminated in me being admitted to hospital a couple of weeks ago with a suspected brain haemorrhage that turned out to ‘only’ be viral meningitis!
Skipping back a couple of months to the start of May I visited my GP feeling very run down, and suspecting that I had a mouth infection. I did. My GP looked really shocked at just how run down I looked and he signed me off immediately with stress.
Work was crazy, I wasn’t sleeping, I hadn’t had a proper holiday since October 2013, and my relationship with Jane was in a pretty bad place for a number of reasons. I don’t want to say too much just now about the problems that Jane and I were facing except to say that they were pretty serious, and that I cried in a way that I hadn’t done since… well, since my dad died in 1998.
Things are much better between us now, I’m happy to report. Relationships Scotland have been a good resource and a good support through this crisis. I’m sure I’ll blog more about it in due course.
Fast forward to the afternoon of Wednesday 23 July. At work, I noticed that I had a headache. I don’t get headaches very often, except when I’m particularly dehydrated and being the carrier of a kidney condition I’ve learned over the years—not least following a rather terrifying visit from two Leningrad medics approaching me with a scary smile, a mouthful of unintelligible language, and a loaded syringe at my bedside on a school trip to the then-USSR in 1988; the UTI/kidney infection that they had come to diagnose prevented me from attending what would have been my first NYC course at Darley Dale (#2) in April 1988—to keep myself well watered particularly in the heat. And boy! hasn’t it been hot of late? Our office was unbearably hot, we had just acquired a new web developer and he had been squeezed into our already overcrowded office. With five desks in the room now it was getting cosy in both a literal and metaphorical sense. I took a couple of swigs of water, hunted for a couple of painkiller tablets from my rucksack and determined to sort it out properly once I got home.
The following morning (Thursday 24 July) I woke up, reached for my glasses, checked the time on my phone and then noticed that I had what looked like a small flashing square in the middle of the field of vision of my left eye. I put it down to having looked at my phone in the dark. It felt like the effect of when you stare at a bright light, like the sun (just in case you couldn’t think of any examples of a bright light… a torch might be another example. Or a mobile phone screen. Or the illuminated bulb from a lighthouse. I digress.)
It’s fine, it’ll pass.
A couple of hours later I was sitting at my PC at work and mentioned to my colleague Steve that I was struggling to see properly. The small flashing square in my left eye had grown a little and was really beginning to affect my ability to focus clearly. Maybe I was just too tired? Perhaps it was related to my high blood pressure, although the renal people seemed to think that it was under control. Never mind, I had an appointment to see my optician the following afternoon, she’d be able to look into my eyes and determine if there was a problem.
Friday 25 July comes and the optician is satisfied with the health of my eyes. My prescription hasn’t changed again (I am still using my prescription from 2010, which is unheard of—from 1979 until 2010 my eyesight has steadily deteriorated, until now. Oh the irony!), and I managed to see beyond the flickering blob, now about ten times the size it was the previous morning. Emma, the optician, wondered if I was experiencing an optical migraine.
This was the first time that someone had offered a diagnosis. I’ve never suffered from migraines in the past so that explained perhaps why I was unfamiliar with the symptoms. I looked it up online and learned that they could be brought on by stress, heat, dehydration. It was all beginning to add up. The article explained that they affected only one eye and would last a maximum of 72 hours.
I woke suddenly in the middle of the night, very early on Saturday (26 July) morning, my teeth were chattering and I felt frozen. I was so cold, but sweating. I was clearly in the middle of a fever. This wasn’t good. I stayed in bed on Saturday morning but by lunchtime my condition had worsened and Jane phoned NHS 24. After about three hours of pestering them they organised an appointment at the out of hours’ service at St Andrews community hospital, and Jane drove me there.
I saw a kindly but slightly dishevelled GP who examined me, and from my generous gift of a small pot of wee, coupled with my medical history, he diagnosed a urinary tract infection. The eyesight distortions he reasoned was caused by “untreated sepsis”. Armed with a filled script for antibiotics I returned home to bed.
Sunday (27 July) I got worse. More fever. More headache. More chest pain. More… everything!
Monday (28 July) I saw a local GP. She changed my antibiotic and gave me something for the migraine. “If that doesn’t work in 24 hours,” she said, “come back tomorrow.”
Guess what?! On Tuesday (29 July) I returned and saw my own GP. He reckoned that we hadn’t broken the migraine. We were now seven days into the headache, which had now moved from the left hemisphere to the right, and my right eye was now affected. He sent me away with a two day prescription for a very strong painkiller.
It didn’t work. I got worse.
On Thursday (31 July) I was back in the health centre waiting room and saw a fourth GP. While sitting in the waiting room at the health centre I mentioned to Jane that the last person I saw who looked as bad as I felt was an ex-girlfriend who had salmonella septicaemia which she’d acquired from licking the bowl of uncooked cake mix!
Dr Mitchell called me into his consulting room. I told him my sorry tale and he looked worried. I always seem to see him at my worst. Dr Mitchell gave me what I discovered later was a full neurological examination, phoned Victoria hospital in Kirkcaldy and had me admitted immediately. After packing an overnight bag Jane drove me there.
Having never knowingly had migraines, which I guess really means that I’ve never had one, the visual distortions were quite beautiful at times. “They are very pretty,” I told more than one GP, “but I really don’t want them.”
As I’ve already said the main effect that I see is a flashing shape in my primary field of vision. This is now in both eyes. The one in my left eye currently looks like a stretched out group of islands; the one in my right like a ragged oblong. Both create a blind spot that makes it hard for me to focus on anything particularly well.
At the centre of my vision it feels like I’ve been staring at the sun, so everything is much brighter, except for this black, flashing spot in the centre.
Then I’ve also experienced random flashing lights across the whole width of my vision, plus what I can only describe as multi-coloured glitter that randomly scatters itself across my view. And if that’s not enough I’ve also been experiencing small crosses, like plusses + mapping their way across my view of view. Like I said all very artistic and at times mesmerizingly beautiful but also quite unwanted.
Following a blood test and a CT brain scan I saw a consultant who told me that it definitely wasn’t a UTI, he suspected that I had viral meningitis. Not bacterial, he assured me, that’s the deadly one. To be honest, I felt quite relieved that this condition had a name. At least I knew what we were fighting.
That night around midnight I was moved upstairs to a ward. I slept surprisingly well.
Friday morning ward round and another consultant swept into my side room with his entourage of junior doctors and nurses. He was kind, and stood behind me with his hands on my shoulders—I felt supported and cared for. A few moments later though he took away my certainty in almost everything for the next five days. He was doubting the diagnosis of viral meningitis. He’d had a chance to examine my medical history and was beginning to wonder if I’d had a brain haemorrhage.
The word that had haunted my family’s medical history since 15 March 1983—beware the ides of March!—the date that my dad collapsed in Nottingham (his birthplace) having just delivered the 1982–1983 ITT/IEE Faraday Lecture, and actually mid-interview with the BBC. Needless to say that interview never got transmitted.
Over the course of that day the plan on how to investigate my condition changed three times. The telling of the final version was interrupted by someone coming to take me for two further CT scans of my brain (one of my veins, the other of my arteries).
“Sorry, I’ve just phoned to cancel that,” the junior doctor told the porter.”
“Has he just stolen your punchline?” I asked.
“Yeah, and he’s thrown my flow… what was I saying?”
He was telling me that they’d decided that three CT scans in two days was exposure to more radiation than I deserved. That would have involved me being injected with a dye, waiting for it to pass through the veins in my brain, scanning that, waiting again for the dye to clear, then re-injecting me to do the same for my arteries.
Plan C was to give me a lumbar puncture that afternoon, and wait for Monday to poke me into the MRI scanner to do both veins and arteries at once, using magnetism rather rocks that glow in the dark.
The lumbar puncture was less painful than I had feared. I was rather delighted to learn that the other name for a lumbar puncture is a ‘spinal tap’, the name of a spoof rock band from the 80s, whom I saw live at Wembley at the Freddie Mercury Tribute concert in 1991. They closed with the bassist, Derek Smalls, walking up to the microphone and shouting, “Goodnight Wimbledon!”
Saturday and Sunday were very slow days. I had a lot of time to think about what was going on. If it was a haemorrhage was I at risk of having more? My dad had had three. What if that happened? At worst I would die. I didn’t want to die. I thought about Jane, Reuben, Joshua and Isaac. I thought about my mum Rosalie, my sister Jenni and brother Eddie. I cried. What if it left me disabled, or brain damaged, as it had with my dad? I thought about losing my job, about the possibility of needing to move house. I had to stop my imagination running off before me, concocting all sorts of tragedies.
In the end I decided not worry about it. Whatever had happened had already happened. Besides whichever path I explored quickly ended with “…and then the doctors would need to do something but I don’t know what that is due to my lack of medical knowledge”.
Saturday and Sunday became quite peaceful from that point onwards.
On Monday my MRI was postponed until the afternoon, and then about an hour earlier than I’d been told a porter came to collect me. It seems that my scan had been rescheduled yet again. He threw a blanket over my shoulders and wheeled me through corridors, up and down in lifts, to the old part of the hospital which quite shocked me, to be honest. It was tatty, there were holes in some walls, sheets of plastic hanging from the ceiling to shield raw brickwork. I felt like I was being pushed through a war zone! (I was feeling quite melodramatic, and I couldn’t see very well…!)
This was my second MRI brain scan. I enjoyed it just as much as the first, which wasn’t much. I am quite claustrophobic so the idea of being shoved head-first into a tube filled me with dread. The radiographer invited me to lie down on a long, thin stainless-steel tray which I could see would be pushed into the scanner on a track. With my head in the right place she placed a shaped cushion under my knees to make me feel more comfortable; I felt like I was being packed for shipping. Then she gave me a bulb on a long tube.
“If you feel uncomfortable or want to stop for any reason,” she told me, “just squeeze this and we’ll come and pull you out.”
“And don’t worry, it’s been used plenty of times already today, so I know it’s working.”
Perhaps a little too much information? I could feel my heart rate quickening.
The radiographer placed a pair of headphones over my ears, and then lowered a cage over my head.
I was really beginning to panic now.
“Are you okay?” she asked.
“I’m really anxious.”
“About the procedure or the results?”
And with that I was moved head-first into the machine. I closed my eyes; I didn’t have my glasses on anyway so I wouldn’t have been able to see anything anyway. Not that there is anything to see, apart from a big old helping of pure claustrophobia.
My head was spinning. I could feel the panic surging within my chest. My stomach was doing somersaults. I could hear a voice within my head screaming at me to squeeze that bulb with all my might. I wanted out. I just wanted out.
And then the rational part of my brain spoke. I needed this scan. I needed to know what the results were. I needed to know if I had had a haemorrhage; even a small one. I’ve done this before, I can do this again.
I took a deep breath. My eyes were still firmly closed. And another breath. Then I began to recite the Jesus Prayer (“Lord Jesus Christ, Son of God, have mercy on me a sinner!”) which I’ve used in the past to help settle myself. And another deep breath. I could feel the panic lessening.
Then the music started. From a sheet in the waiting room I had selected to listen to a selection of the hits of the rock band Queen. I know Queen, they were my favourite band as a teenager. I have a copy of the guitar that Brian May made with his father Harold, manufactured by Burns—that’s how much of a Queen fan I was.
The music was SO LOUD! I began to get anxious again. I’m not sure I can do… And then the scanner began which almost drowned out the music, which immediately made sense of volume.
I have no idea what an MRI scanner does, except that it uses powerful magnetic fields to take 3D scans of your body. If I was to guess based just on the sounds and vibrations that it makes then I’d say that it mostly does drilling. A lot of drilling.
I lay back and as much as I could, I imagined that I was standing in front of an open window listening to Queen while someone was digging up the road outside. And as much as I could I tried to relax and enjoy the experience. About five or six songs in the music suddenly stopped.
“Gareth, you’re doing great!” said a feint, high-pitched Scottish voice in my head. It was the radiologist. “We’ve got one more scan to do, which should take about five minutes. Then we’ll come and get you.”
On my way out of the scanning suite I was told that the results should be available in about two hours’ time.
I returned to the ward.
I had to wait about 24 hours, though, before they were conveyed to me.
The following afternoon a neurologist came to my side room and talked me through the results and then carried out a similar, but more thorough, examination to the one that Dr Mitchell had done with me about five days before.
The MRI scan was clear: no aneurysms. No clots. No brain haemorrhage. No stroke. The worst had been ruled out. A felt myself relax a little. They did find a cyst in my brain, but this is quite common, seemingly, and is nothing to do with my polycystic kidneys.
Given the combined results of the various blood tests, the lumbar puncture, the CT and MRI scans it looked like my wish had come true: I had viral meningitis. I would never have dreamt that I would ever wish for meningitis, but given the other options it seemed to be the most preferable.
I was discharged that afternoon, given a small pot of strong co-codamol tablets and sent on my way, with the promise of an outpatients’ appointment at the ophthalmology clinic to examine my eyes more closely and determine whether there was any long-term damage.
For the first week or so since returning home I did little but sleep, up to about 18 hours a day.
My eyesight is still affected but continues to improve in very small increments each day. I do feel as though it’s going to be okay, or at least my optimism is carrying me in that direction whether I feel it or not. Today the blind spot in my left eye has all but disappeared, but still flickers a little; the blind spot in my right eye appears now to be shrinking and becoming less opaque.
I saw the ophthalmologist on Thursday (14 August). That appointment didn’t quite go as I had suspected. He reported that my retinas (in both eyes) were quite mottled, but he didn’t understand why. I’ve to go back for more tests, but I’m pretty sure it’s related to the viral meningitis; a friend who has had this disease reported experiencing something similar.
The GP has signed me off until the end of this month, to give me a good chance to recover without feeling that I need to race back; not that I could drive yet, or see my desktop computer at work.
I am currently typing this on my PC at home with the screen resolution set to 1280 x 1024 (instead of 1920 x 1080) as I was getting tired of using the accessibility screen magnifier set to 300%.
The trial continues…
Tuesday 19 August. I’ve just revised the dates as I realised that I was a week out. This began on Wednesday 23 July, not 30 July.