Brain haemorrhage and stroke, 20th July 2019

A year ago, back on Saturday 20th July 2019, I had a brain haemorrhage and stroke.

It is only now that I feel ready to talk about this.  I jest!  It is talking about myself so something which I love to do and do all the time.  The delay though has meant this has turned into an anniversary post. So, Happy Brain Haemorrhage anniversary number 2 to me! Yes, 2 as I also had a big one at the age of 15.  I will explain why there was a delay in writing this post in a bit but firstly, here’s the story.

It was a nice, sunny day and I was feeling superb.  The night previously I had finally decided on which return flight I wanted and booked it for my first ever visit to the United States of America.  I did go to bed really late that night but equally woke up really late; I was well rested.  I was excited as the holiday was now beginning to slot into place.  As per usual, I went to the gym for a quick run, returned home, got ready and was really looking forward to an upcoming event that evening.  It was due to be my 10 year secondary school reunion, an event which I had – meticulously organised.  The night before, as well as booking the flight, I had been finalising hundreds and hundreds of photos from over a decade ago to show on a big screen at the reunion. Just before I left for the reunion, I had a very late lunch and then went up in the attic to get some old school year planners I had kept.  Whilst looking for them, I quickly swung my head round and bashed it on a beam.  I remember thinking about it being such a wallop.  Apparently this did not have an effect whatsoever on what was just about to happen.  I got ready, left the house, stepped on my scooter and rode along the pathway by the lake into town.

I wondered how the evening would pan out; it had been a whole decade since I had seen most of the old school friends.  A few minutes after leaving home, the scooter veered to the left.  I assumed the weld had gone on this £50 eBay scooter which I hadn’t had that long.  Uhhhh.   I immediately went to turn the handlebar to the right to see if anything happened but realised my right arm didn’t do anything.  I felt a swish through my brain, I got severe double vision and my right side had gone.  I got off and lowered myself quickly to the ground.  Ohh no. No. No.

I had had a brain haemorrhage and subsequently a stroke.

Brain haemorrhage and stroke, 20th July 2019

I remember thinking that I wasn’t ready to go yet.  I imagined this day would one day come but I fully anticipated it being many years in the future and I expected it would involve a major headache as I had had with my first one when I was 15.  There was no pain at all with this.

With severe double vision, I managed to call my Dad. Five minutes before I left, he had gone out but I knew he was still in Wellingborough.  From my description of the pathway, I knew he would know exactly where I was.  I knew I had a stroke because of the symptoms.  I didn’t know how big the bleed was though, whether it was continuing to bleed and whether it was clotting on the brain.  I needed to get to hospital as soon as possible for a scan.  Time was of the essence.

I called 999. The call handler asked for the address of the emergency.  I could not give one though for I was in the middle of a pathway that leads up to town.  I asked if she knew where Sainsbury’s was in Wellingborough as I could easily describe exactly where I was just down the hill after the lake a stone’s throw before the metal railings.  The call centre is based in Nottingham though so she did not know the local area.  The campaign for what3words.com was picked up by the media only months later.  Under usual circumstances I would have gone to Google Maps and found the nearest street, but I was in a shambles.  My control centre was compromised.  I don’t know if it were the panic setting in, the double vision or the weakness or a combination of all this but I couldn’t think how to tell her where I was.  Luckily at that moment a woman walking her dogs appeared and I asked her if she could take over the call.  She did and told the paramedics the nearest street.  In between this, my Dad arrived.  Everything seemed in slow motion and it felt like an age.  I realised the left side of my face became hyper-sensitive and as the wind blew I felt an odd sensation on the upper left back the part of my head.

I am not sure how but with the paramedics holding me by the elbows, with legs like jelly, I managed to hobble to the ambulance.  They connected me to the heart monitor; my heart rate was high.  Despite the state I was in, I remember thinking it was the utmost importance to call someone at the reunion to let them know I was taken ill.  I remember the overwhelming sense of dread that I could no longer attend the event that I had organised and was so looking forward to.  I was blue lighted over to Northampton General Hospital.  Dad drove there and walked in just after.  Owing to the double vision and the shock, I soon began to vomit and I continued to do so for another few hours.  I did not know it was humanly possible to have that much vomit.  I was not well.

I was taken for a scan and it confirmed not to be a continuing clotting bleed and it was stated that during the night my scan would be sent and reviewed by the team at John Radcliffe Hospital taking into account my previous history.  A short while later my Auntie Chris and Uncle Alan walked in.  I was so, so very pleased to see them.  This was the first medical event since Mum had died and their care, love and support reminded me how Mum would have been there for me.

I wanted to talk to an expert to ask what was happening.  I needed answers.  That night I remember the worry that I would fall to sleep and not wake up again.

The next morning it was confirmed that I would be transferred from Northampton General to John Radcliffe Hospital. The ambulance came to pick me up in the afternoon. As they wheeled me along the corridor I took a photo of the sign above the door.  It was funny because the evening before, because of the lack of information about what had actually happened to me, and the fact I was hoping whatever this was would pass so I could go to the USA, I had tried to convince myself that it was only an incredibly bad bout of food poisoning or something.  This sign above the door disproved this.

The ambulance blue lighted me there and occasionally I turned my head and with one eye shut mananged to focus through the gap out the front and watch the drivers get out of the way.

I think the following photos sum up my attitude to life.

 

I like to document everything, so I asked the lovely paramedics and they obliged.  I was very thankful.  I remember the surreal feeling here. I felt more myself even by the next day but my speech was still affected and vision was still cross eyed.  I had to keep my right eye closed.  There were two of everything otherwise.  My right side felt weak.  I felt fine but I wasn’t fine.  I couldn’t walk well but I could briefly stand.

Below is a general photo feeling sorry for myself with one eye closed selfie taken a few days after admission to John Radcliffe Hospital.

A few days later I had a CT head and then finally my Doctor came to discuss with me what he thought we should do now.  He said that this scan was not detailed enough and a full angiogram was required.  I could have told him this!  He confirmed it was a bleed that had mainly gone into the cavity created from the previous haemorrhage.  In order for a more detailed scan there was a wait.  There were massive delays as the main machine broke which led to a massive backlog and then of course emergencies took priory of which I did not mind at all.  What I did mind is that they told me on a handful of occasions to prepare myself by not eating or drinking that day.  Considering this happened around the hottest time of the year, I was a dehydrated mess! I was so drowsy.  It was at 3pm this day that they said the scan would not be happening.  On another occasion I went down for an eye test and because of the queue before I went in, the porter to take me for the angiogram came and I was not there.  This led to another delay.  Ahhh.  Below is a photo of me waiting.

Finally about a week later I had the angiogram.

Here’s a video I found describing what an it is.

And below is a video I made back in 2014 of me having an angiogram to monitor the AVM.

After the angiogram you are required to lie completely flat for 6 hours after in order to not rip open the artery they went in.  I forgot and ordered a curry that morning.  I tried to eat this lying down.  The results are shown below.

So all in all the symptoms were:

Double vision which thankfully corrected itself after about five days.

Right sided weakness but mainly right sided coordination issue.  This took months and months to get better and still isn’t 100%.  I still can’t carry a drink in my right hand.  Nor can I type correctly.

The left side of my face was overly sensitive.  I remember having showers and thinking the water was blisteringly hot because I could feel each droplet of water hit the left side of my face.  There’s still a slight difference now.

My right side of my jaw felt really bruised when I pressed it.  This lasted for months and months.  There was an inclination not to use this side of the mouth to eat as it wasn’t as strong and there was an ache so I ate on the left side.  This is something which even a year on I still tend to do a lot.

The left side of my jaw was clicking every time I bit down.  This lasted a quite a few weeks.

My mouth could not open as wide.  This lasted about a month or so until a sort of therapy.

Here are some of the scans which I find fascinating:

Below is a video with my sister replicating a test the doctors do to look at coordination.  The left side is fine but the right side was most certainly not.

After a week or so in hospital and being monitored I wanted to go home.  I knew that the best place for me was in my own bed and it would have done me so well to be able to go and force myself to try to make a cup of tea and just live my life.  The power of doing is so important.  In hospital, I spent a lot of time resting which perhaps in hindsight was what I needed but it was not doing good for my muscles.  I remember throughout my stay in hospital I was beginning to get a case of my leg muscles seizing up and they started to spasm.

Below is a video of me walking down the stairs. Look at me go.  Possibly not the best foot wear.  I used to nearly always wear flip flops before.  I soon wore my Tom’s for the support on the top of my foot.  I didn’t think about the brain power required for wearing flip flops.  My right foot just isn’t wired correctly.  Wearing them is still rare.

On this walk or one of the many others I did I decided to treat myself to a doughnut.

 

Below is a general cannula photo.  I had many of these inserted during my stay.

And here is a photo of the machine that checked all my levels. I saw this so many times during my stay. All the nurses commented on my low resting heart rate. A sign they say if found in a young person is a sign of someone who is fit and healthy and who often exercises.  A nice 55bpm.

What could have raised my blood pressure is the view out of the window of the cemetery?  But I thought it was quite funny.  See the photo below.

To make up for it, just to the left of the cemetery is the helicopter landing pad.  I watched it land a few times.

As I took some photos of them here are some meals.  I thought I would pop them in here.
They were really nice.

 

So the blood on my brain was the reason for the delay in writing this post.  I aimed to write this piece soon after I arrived home from hospital but for the first few months sadly, my typing skills were too poor.  The co-ordination between my brain and my right side was quite affected so typing was too much of a difficulty.  I don’t usually look at the keyboard and suddenly thinking that my right hand is tapping the correct keys but a jumble of different letters appearing on the screen left me feeling disheartened and frustrated. Gradually my ability to type slowly came back but only after tapping day after day after day and having to constantly have my right index finger hovering over the backspace key and seemingly hitting it intermittently.  Over time this requirement decreased.  My typing has not returned to complete normality but it is so much better and right now; in the most part the connections have improved and I have now slightly adjusted the way I type.  As I look down right now my left hand dominates, as it used to, to be honest, anyway.  As I am left handed , this hand and predominantly my right index finger, the one next door and thumb work in unison.

 

I want to take a dedicate space here to thank everyone who came to see me. Friends and family visited almost every day and it made the stay so much better. Thank you.  It  was a massive support.  Massive. Particular thanks to Alan and Chris who came over so often. Thank you.  I forgot to photo a few people.  Every day someone came over and it got to a stage where I nearly had to create a booking system. Below are some photos:

 

 

Seb, my best friend in Nottingham drove down to see me on one of the hottest days of 2019. It was the first time I went outside in over a week.  Was I pleased feel the gentle breeze and the albeit incredibly warm sun on my face?

It is well documented that I talk about how much of our space is given to the car.  I demanded Seb left me in the middle of this space and took a photo.  A massive car often has one person inside!  All that space.

After my photoshoot, we chatted for ages on a bench outside.  It was lovely.

 

My Dad and Auntie Lynn.

 

Alan and Chris

With Mollie and Vishal. I also asked a random person if she wanted to be in the selfie. She did.

Some ex-colleagues came to see me, Zuzana and Gabriella.

With Jane and Jess.

With Amy.

With Tom

Me and Dad.

David who I know from uni.

On one of the visits from some family friends we were chatting for so long that I had missed dinner time and they had taken it away.
“No worries” I thought!  I ordered a pizza on Deliveroo.  I sneaked out from the ward and asked for the cyclist to meet me at the edge of the car park.  Yum!

 

In total I was in John Radcliffe Hospital for two weeks.  As it was nearing the end of the second week, I asked whether I could be discharged.  There was hope I could be.  My doctor needed to sign this off.  On the Friday, I suddenly saw weird white lights something akin to a kaleidoscope.  I reported this as it was vision and it could have meant something.  The doctors believed it might have been dehydration or change in blood pressure but before I could now be discharged the whole neuro team needed to review me.  This led to hours and hours of delays.

The afternoon was passing and it needed to be signed off here and there.  It got to about 7pm and it was confirmed I could go.  I had the papers. I phoned Dad a few hours before saying that come what may I was going home and could he be ready.  He strangely could not.  I phoned my cousin Becky and her partner Griz, and they drove to pick me up.  I still am so very grateful to them.

The corridor to freedom below.

 

The reason I wanted to be discharged was not entirely to go to the following event it was for the reasons listed earlier but I used this event as a goal and deadline.  Just over a week before discharge, I decided that I would do everything in my power to go to Wellingborough Pride.  As Pride season started, I decided to attend as many Prides as I could.  I attended Prides in Northampton, Birmingham, Essex, Edinburgh, London, and Bristol so far that year.  I made my hometown Pride my target.

And I managed to get there!

That evening a short while after I arrived home, Seb arrived too.  I asked him to be on standby and had confirmed that I was shortly to leave the hospital.  He kindly offered to take me to Wellingborough Pride in his car and be with me for the entire day.  I really appreciated his support.

Below are some photos of me with my rainbow leggings on. As you can see, there is a bit of an issue naturally standing.

The recovery journey from this was long.  It seemed that for the first handful of weeks I could notice many gradual improvements but then it suddenly felt like it plateaued.

A couple of days after I arrived home, I decided to get back on my bicycle.  Thankfully Vishal popped round to support me.  Again, so thankful that he was there.  It was such a strange feeling sitting on my bicycle.  It felt like an age since the last time I pedalled.  I held on to a bridge and supported myself with that.  I just couldn’t balance as I tried to cycle slowly.  I decided to just go for it and pushed off.  It was so precarious but I did it.  Such a surreal feeling.  I repeated this a few times.  It took weeks and weeks to rewire the connections.

It’s difficult to see how bad it was.  The way I describe it is that it felt like my right leg was falling off the pedal.  It could not stick to the pedals.  Watch the above video right to the end.

It took weeks and weeks and weeks of going out walking and cycling short distances to improve.  Finally I got to a stage where I was comfortable and felt safe to myself and to others to get back on the road.

I have since had some Stereotactic Radiosurgery treatment which I will discuss in a later post.

Thanks for reading or listening,

Speak soon,

Samuel. x