#2: Pre-Op
Updated: Feb 27, 2021
William Drummond Ward
21-22/05/2020
After waving goodbye to my family and getting strapped into the ambulance I couldn’t help but fall asleep, and by the time I’d woken up, we had arrived at St. George’s in Tooting. Upon arrival I was wheeled in to the hospital by the paramedics and taken to an ‘amber ward’ - where I was tested for Coronavirus and had to wait 24 hours for the results to come back (negative thank GOD!). For those who are wondering how they test for Covid, they shove a swab up your nose and down your throat - simply delightful. During these 24 hours I was taken care of by a lovely male nurse (shoutout to Dragos) who was wonderful. At this point the hospital was still unsure whether I needed to be operated on so I was still nil by mouth (unable to eat or drink) and consequently - still absolutely STARVING.
To add to my discomfort, I was desperate for a wee but refused to use the bed-pan provided (given my traumatic experience at Frimley) so held it in for as long as I could. Eventually I persuaded the nurses to take me to the toilet, but this time the nurse’s effort to get me out of bed and onto the komode failed. I was so incapable of holding my own weight, I was falling all over the place. Still unable to pass urine into the bed-pan, I had to have an ultrasound of my bladder to see how much liquid I was holding. It’s safe to say that I wasn’t exaggerating when I said I was desperate for a wee - the normal functioning bladder volume is 300-400ml, but mine was 950ml! This resulted in the last resort which was to fit an ‘in-and-out’ catheter (ew). This was inserted by the male nurse which, prior to all of this I would’ve found slightly uncomfortable. However, I was completely stripped from any self dignity and was left in the hands of the staff - something that I had to come to terms with quite quickly - but at this point, all I cared about was emptying down below!
As the night shift ended and the morning shift began, I woke up to a new nurse - the lovely Connie who was a similar age to myself. At this time, it had been approx 36 hours since the bleed and I began to process what was actually happening to me. Everything was still very up in the air but despite all the not knowing, I kept reminding myself that I was in the right place, being looked after by the right people. I was informed by a doctor that I was going to have an angiogram: a type of X-ray used to examine blood vessels. Blood vessels don't show up clearly on ordinary X-rays, so a special dye is injected into the area being examined. For me, this meant injecting local anaesthetic and inserting a tube (catheter) into the artery in my groin, so that the dye could be transmitted to the region of the brain where the bleed took place. As the doctor was giving me this information, he ran through the risks of the procedure and this is when it all started to sink in how serious this was.
Main risks of Angiogram:
Damage to the artery, with the blood supply to the limb being affected
Heart attack
Another stroke
Damage to the kidneys caused by the contrast dye
Death :)
Soon after I had to sign a letter of consent and was wheeled down to theatre in my hospital gown. I remember feeling really vulnerable and scared about what I was about to undergo. I felt 10 years old again and couldn’t help myself from crying. The procedure took an hour - it was an uncomfortable process but I’m still here to tell the tale! By the time it was all over my Covid results had come through, I was allowed to eat again and I was soon moved on to the neurology unit: Kent Ward. Whilst the thought of eating sounded like a luxury, the left side of my face was another thing that had been affected from the stroke (see Instagram highlights for footage!). I vividly remember trying to feed myself with a spoon and missing my mouth several times. This was proving to be more hassle than it was worth, so I gave up after about 2 mouthfuls. Hunger levels = unsatisfied.
Kent Ward
22/05 - 03/06/2020
It was here where I met with my consultant, Rob, who after having seen the angiogram could confirm that the cause of the stroke was from an ‘arteriovenous malformation’ (AVM)
Arteriovenous Malformation (AVM)
An arteriovenous malformation (AVM) is a tangle of abnormal blood vessels connecting arteries and veins in the brain. They are very rare and occur in less than 1% of the general population. The cause of an AVM is still unclear, but it is something I could have likely been born with. Common symptoms caused by AVMs include headaches, strokes and seizures. Bleeding is the most serious complication of an AVM and will occur in approximately 4 out of 100 people with this condition every year. The burst materialises due to the high pressure of blood flow from the arteries. Sometimes, a bleed may be small and produce no noticeable symptoms but around 50% of the bleeds are significant with permanent disability in half of these cases and death in the other half. It is also important to know that an AVM can be present and not produce any symptoms throughout a person’s lifetime.
The next stage was for the doctor’s to consult and decide what the best option was going forward. There was no immediate rush to operate as the swelling needed to go down beforehand. The bleed itself would eventually disperse overtime, but the main reason they needed to operate was to remove the AVM to reduce the risk of a re-bleed which in their words “next time, could be fatal”. This could have been done in numerous ways…
No operation - the doctor may decide to observe the patient, which may include using anticonvulsants to prevent seizures and medication to lower blood pressure.
Radio-surgery - this aims precisely focused beams of radiation at the abnormal vessels. The procedure is noninvasive and painless. However, the disadvantages are that it works best with smaller AVMs and may take a long time to show effect which means that a high risk of haemorrhage still exists.
Craniotomy - The advantage of surgical treatment is that a cure is immediate if all the AVM is removed. Disadvantages include risk of bleeding, damage to nearby brain tissue, and stroke to other areas of the brain once removed.
For someone who is quite well-kept and values personal hygiene my hair was still untouched from 3 nights before when I had cracked my head open - still covered in blood, my hair had turned into a giant clump of matted, crusty, clump. Nice. There was nothing I wanted more than to freshen up, but given my situation there was nothing I could do. For a short while I felt restless and helpless, having to ask for help for the smallest of things. It began to hit me that in the space of 3 days I went from being a fully able human being to someone now classified as a “dis”abled individual. Feeling pretty low, I knew this was not how I could carry on. I found some inner strength from somewhere and tapped into what I’ve been practising through my own journey of self discovery. This was the best thing I could’ve done and was how I intended to go on with my fight.
Taking inspiration from Edith Eger’s novel ‘The Choice’, "no matter how frustrating or boring or constraining or painful or oppressive our experience, we can always choose how we respond.” In light of my own situation, and being unable to have visitors, I knew I had to make the most of the people I did have around me - i.e, the nurses and the patients. Upon reflection I often wonder if my experience in hospital would’ve been different if I was allowed visitors. I want to go into more detail about this later on, but I hand on heart say I have shared some of the most incredible moments in here with some of the most amazing people, some of which I may not have encountered otherwise.
(Special shoutout to Mavis, Rose and Emilija - all members of staff who looked after me on Kent!)
One nurse who I bonded with in particular was Emilija, who I met on my first night on Kent Ward. I instantly warmed to her motherly nature and felt as though she was the next best thing to a mother-like-figure given that I still couldn’t be with my family. One example of this was when she offered to sort out my hair that was still bloody and matted. She washed the blood out of my hair in a small bowl of water and gently combed out the knots. Soon enough my hair was washed and plaited and I no longer looked like I’d been dragged through a hedge backwards.
The first few weeks in hospital took some getting used to - not only did I have the world's worst headache 24/7 but I was on bed-rest for the first week which meant that everything happened from my bed. From all the obvious things - I was washed here, fed here, my catheter was emptied here, to the smallest of things which proved to be so much more difficult because I could only use one hand. I had to ring the buzzer for everything - if I wanted something from my bag, or from my cupboard, to put my phone on charge, take it off charge, to untangle my headphones, tie my hair up, take it down, reposition myself in the middle of the night if I was uncomfortable - if you’re a fidget like me then you best believe I was ringing that buzzer non-stop… the only time I could leave my bed was to go for a sh*t.
Adapting to this new life was hard, particularly from the person I was just a few days before… I still can’t wrap my head around how within the space of a day your whole world can change. The fast-pace life I was living and the independence I gained from living away from home for 4 years was taken away from me like that *clicks fingers*. It started to sink in that this could be it… and from the conversations leading up to surgery the Doctors weren’t confident that I would regain feeling or movement in my arm and leg again. With little going on around me I was sat with my thoughts and began picturing what my life might look like if this was the case. This life that I had so carefully carved out was going to have to change. A constant stream of questions were running through my head, bouncing back and forth, and there was no one who could answer them. What about all those walks I was loving during lockdown? What about exercising in general? What about my job? I can’t even get up the stairs? Will I even be able to move back to London? Go out in London? Socialise with my friends? Oh god… what about travelling?????? When I’ve been travelling before it’s been so fast-pace - getting on buses, boats, mo-peds, running through the airport for connecting flights, let ALONE actually experiencing each place itself - mountain treks, scuba diving, the hustle and bustle of a busy city…
I spoke to Richard about how I was feeling and as always, his optimistic, positive attitude reassured me that where there’s a will there’s a way. I also reminded myself that this wasn’t actually the case yet… and as my mum has always told me, don’t worry about something that hasn’t even happened yet - two mantras that I try to live by. Besides, you always hear of that miracle recovery story, perhaps that could be me? Yes - I could be paralysed for the rest of my life, but on the flip side, I could also regain movement across my whole body - and I had to hold onto the latter in order to move forward in a positive way.
From this point I started to see life like this…
If I don’t regain any movement then what a fantastic life I have lived.
*Side note* - in writing this blog I aim to capture the rawness of all of it all so instead of just writing from memory i'm going to include snippets of conversations at specific points along my journey.
Whatsapp Exchange with Izzy:
26/05/2020
I tried my very best to keep this at the forefront of my mind, always.
It took a week for the surgeons to decide what the best option was in terms of surgery - I can’t even imagine how my parents felt waiting for this news. It was too dangerous to let the bleed disperse naturally. Radio-surgery was the least invasive option but it takes a few years, and the risk of a re-bleed during this time was too high. This meant that brain surgery was the best option for me, however this also has its complications. Where the AVM was positioned was right next to the region of the brain that controls your speech - something that I was so thankful to still have at this point for it is your voice and thoughts that make you individual. The surgeon warned that this was an extremely delicate operation and any slight shake of the hand could cause major irreversible life changes. I was expecting this news but it didn’t make processing it any easier. The only positive that came from the conversation was that my droopy face had improved!
The operation didn’t take place until a week later and I was sat with these thoughts alone. Leading up to my operation I had endless deliveries of cards, flowers and presents and watched the entire series of Peaky Blinders (would recommend) which kept me distracted. I also managed to persuade one of the nurses to wheel me to the ward entrance so I could catch my mum and sister doing one of their very many food drops for me. For those of you that don’t know, I’m a) gluten free, b) vegetarian and c) love a home cooked meal - so the next few months on microwave meals was not a vibe. Forget Deliveroo, it’s all about Deberoo (mum’s rebranding)!
Alongside all the lovely deliveries and home cooked meals that kept me going, I want to mention some of the amazing relationships I formed with other patients during my time on Kent Ward. Sharon and Vikki really managed to keep my spirits high during these unnerving times. I will never forget some of the laughs we had with Sharon at her hallucinations (due to medication). One time she was convinced she was turning into a big ball of cheese and her mission was to fly through the air and land on a giant pizza base (honestly RIBL - rolling in my bed laughing)!
My time on Kent Ward was a bit of a roller coaster, but on the whole a surprisingly calming experience. I spent a lot of time reflecting, taking it all in, and preparing myself for what was yet to come. Brain surgery let me hear you!
Brain surgery and post-op antics continued in #3...