A stroke of luck – episode 7

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I was now closer to my goal of getting back home to Suzy and our dog Bertie than I’d ever been. After she left I struggled to get comfortable, mostly because of the ten-centimetre gash and metal staples in the back of my skull. Lying awake tossing and turning, I started to get anxious about what the next few days might bring. In the morning I would have another angiogram, yippy! We were hopeful it would show that the AVM had been one-hundred-percent removed so that I could start my recovery in earnest. If it didn’t, I could be facing another surgery. I decided that I’d cross that bridge if I came to it and to try and get some sleep, but my fellow patients had different plans for me.

The high dependency ward was at double capacity due to the Covid outbreak, and the additions definitely made it noisier. In the bed on my left there was an elderly gentleman who had the most amusing bodily sounds. His cough was loud, phlegmy and persistent, and it reminded me of Tommy Cooper’s laugh, either that or a bad Elvis impression. He kept wriggling around and suspiciously squeaking the bed frame, while trying to hoick up his gown. This regularly prompted the nurse to very dryly say

 ‘I told you before, nobody wants to see that Gerald…’

  ‘Ah ha ah ha-ha ha’ he’d curl up his top lip and cough on cue.

At first I enjoyed listening to all the sounds. I tried to imagine each person’s life, and what had happened to them; I wondered if they’d all been as lucky as I had.  Sadly as tiredness crept in and the painkillers wore off, the lack of sleep made me slightly less charitable. In fairness I had just undergone major brain surgery. Still, I’m not proud of how quickly my thoughts went from, isn’t it a miracle that us fourteen strangers have been thrust together by fate, to, this is an inescapable nightmare, please all of you just instantly recover and leave me in peace.

On my right-hand side was a man who snored so loudly that the walls shook. The noise reverberated around the room, making it feel as if it was emanating directing from my pillow. I’ve never understood why people with this affliction always drift off immediately and seem to get a full eight and a half hours sleep no problem. Even with my earphones and music on full-blast I could still hear it, like a blunt saw-blade tearing slowly back and forward through a dense piece of timber. It didn’t take long before I thought actively about throwing something weighty at him. In between snores I could hear another patient talking continuously. It was usually about the consistency of his bowel movements, but a little too often he’d let fly a xenophobic diatribe, about how too many of the nurses desperately attempting to save his life were not really English, and didn’t belong here. It turns out he was basically full of shit. Even though I still had an uncomfortable catheter in, this was starting to take the piss. Sorry, I’ve not slept and I think my bandage might be on too tight.

 ‘Ah ha, ah ha-ha ha’ Gerry Elvis Cooper laughed, helping to break the tension.

I began to feel a bit trapped; for about twenty-four hours after the surgery I wasn’t allowed to lift my head. My neck was really swollen and painful on the left hand side and the same ear was full of wax. It would be weeks before I could get properly comfortable again. The next few days consisted mainly of undergoing a series of tests. Read this, lift that, answer these, all followed by ‘keep going you’re doing so well’ and other general encouragements. Although my eyesight was still quite blurry, it had definitely improved and I was enjoying finally being able to see all the staff’s faces. With their help I slowly regained my independence; simple things like having the catheter removed, washing and dressing myself, felt like progress. By the end of the second day, my head bandage had been shed and I was starting to stand up and move around on my own. As soon as that happened I was desperate to get out of there, impatient to start embracing the life that Dr. Kailaya-Vasan and his team had given back to me. I stopped taking any strong painkillers and only had a paracetemol when things became unbearable. I hoped that with a clear head I’d be able to lift the fog that had settled across my thoughts, and identify which neural pathways might be damaged. The most obvious concern was not being able to read. I could now see messages and information on my phone, unfortunately I couldn’t recognise much of what was written. Together with aphasia, the speech and language therapist diagnosed me with temporary dyslexia. The connections in my brain between the shapes of the words I could now see and their meanings had been severed. Added to that, my brain was switching certain letters around, for example, I would read ‘B’s as ‘P’s and ‘G’s as ‘C’s. It was becoming clear I would have to relearn how to read. Strangely the connections between hearing and understanding had not been affected at all. Megan, the SLT, had given me a workbook with some large printed words on each page. I’d have to spell each letter out loud so that my ears could help my eyes decipher what I was reading. ‘S-b-o-o-n, s-boon, s-p-o-on, s-poon oh of course a spoon’. By piggybacking on my ears, my brain would eventually be able to rebuild/replace the network of roads in my mind that connected visual inputs to meanings. Even now over six months later, I’ve just confused myself by typing the word inbuts, instead of inputs. The simplest words caused me issues, and so I decided to practice reading through the workbook every few hours. Weirdly I was able to write quite fluently, as long as I didn’t try and look at what I was writing. If I had my eyes closed I could type or write with only a few transposed letters, but as soon as I tried to read what I was typing, things would get completely confused. I was given a useful explanation for this; basically the Nero-pathways between reading and understanding were like motorways in my mind. The rupture and bleed on the brain destroyed these motorways and I now had to take the B-roads to access that information. The journey takes longer, is often filled with potholes and it may not even take me to the destination I desire. Thankfully repetition eventually improves the speed and accuracy of the journey and may even eventually convert the B-road back into a motorway. Initially I kept trying to drive at one hundred miles an hour in a twenty zone and that caused a lot of accidents. The more I allowed my senses to piggyback on each other, the quicker the reconnections were being made. Within a few days I could read slowly through the exercise book without making any mistakes.         

Thankfully the angiogram showed that the AVM had been completely removed, and that there was no risk of any further bleeds. Naturally this was a huge relief, and I could now turn my attention completely to rehabilitation. Over the next few days, I would ask every specialist I saw if there was anything more I could be doing to increase the speed of my recovery. Mostly they would just laugh and tell me all I needed to do was rest and relax. Easy for them to say, they weren’t in bed next to a flasher, a chainsaw and racist Charlie over there. Nope there wasn’t a moment to waste, so I started doing my stretches every few hours, practiced my workbook and initiated complex conversations with the nurses about science, psychology and history. On Monday the fourteenth of December, twenty days after being rushed to A&E and four days since my craniotomy, Dr. Kailaya-Vasan gave me the go ahead to be discharged. He was delighted with my progress and felt I would be more comfortable at home. This news choked me up, and I immediately blurted out that I loved him, and I always would. I truly do love him and every single person that has helped me on my journey so far. Without their tireless efforts things could have turned out very differently for me. I excitedly called Suzy to tell her that she’d be able to pick me up after work. I’d heard about seven patients make this call during my stay, and each of their loved ones seemed to have the same reaction. So I wasn’t surprised when Suzy refused to believe me. She had expected me to be there for at least a week, and it seems she was determined that I got my money’s worth. ‘Are you sure? It’s too soon. Don’t rush’. I reassured her that if needed, I could return to hospital at any time, and that I would be better off relaxing at home. ‘But I haven’t put the Christmas tree up yet, and I wanted it to be perfect’. ‘Don’t worry about that, just make sure you bring my pink suit and avocado shirt’. I was determined to leave hospital and start my second chance at life ‘remarkably’. For the rest of the day, I spent my time thanking the wonderful individuals who had carried me through this experience. I promised I would return when it was safe enough to give them all a hug. They and my stubborn single-minded determination had dragged me through the toughest days of my life. I’d done it. Suzy arrived to take me home and I left the Kinnier Wilson Ward at King’s College Hospital ready to start a brand new chapter.

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