On the 23rd December 2007 I had a Sub Arachnoid Brain Haemorrhage (affectionately known in our house as my “head bang”). I talk about it from time to time with family and friends, but sometimes it upsets me and it’s hard to talk about the day you almost died! So I felt it was time to write it all down, purge it from my system once and for all and lay it all out there.
This is not a short blog, I recommend you go and make a cuppa, grab a biscuit and hunker down. There is a lot to say! I make no apologies for that!
So WTF is a Sub Arachnoid Brain Haemorrhage? Well before I begin here is the science bit…….. a subarachnoid haemorrhage (SAH) is a sudden leak of blood over the surface of the brain. The brain is covered by layers of membranes, one of which is called the arachnoid. An SAH occurs beneath this layer. The blood vessels supplying blood to the brain lie in this space, surrounded by clear cerebrospinal fluid. The sobering facts are SAH is a medical emergency. It is a serious, life-threatening condition.
So WTF causes it? There are a few causes but in my case and 75% of cases, there is a weakness in the wall of one of the blood vessels supplying blood to the brain. The resulting balloon-like swelling is called an aneurysm. The haemorrhage occurs when the aneurysm wall tears because of the pressure of the blood as it is pumped through the brain. When this happens, blood bursts into the surrounding brain tissue.
Approx 4,000 people in the UK will have an SAH. And the cold hard facts are 50% of those do not survive. There are no warning signs and there is nothing you can do to prevent one happening.
BEFORE THE BANG
So a few days before the bang I had finished work on the Thursday before Christmas and had taken a trip up to Manchester with a good friend of mine, Anita. Anita is a die-hard Man Utd fan and I am die-hard Liverpool fan. This always makes our friendship entertaining! I had got tickets for Liverpool/Southampton on the Saturday and she had tickets for the Man Utd game on the Sunday. We were going to meet up with another friend who lives up north however I wasn’t 100% sure if I wanted to stay up on the Sunday because it was close to Christmas, my brother was coming up from Bristol on the Sunday and I wanted to spend some time with him.
So we got the train to Liverpool and I took Anita to Anfield for the first time, which she seemed to enjoy! We watched Liverpool beat Southampton and Fernando Torres got a hat-trick (I still blame him for the excitement!). On the train journey back to Manchester I decided to drive back home down to Reading that night as the roads would be quiet. So I had bought a cheap train ticket just in case we didn’t drive and gave Anita my ticket so she could get home after the Man U game on the Sunday. I still think about what might have happened if I had stayed up in Manchester. I would have almost died at Old Trafford – that is a Liverpool’s fans worst nightmare!
It was a 4 hour drive that night because it was really foggy and for some reason coming back down the M6 is always a ball ache no matter what time of day it is! But I got home around midnight and went to bed.
The next day my boyfriend Jed was going to a Christmas Lunch with his mates. I had been invited but my brother was down and I wanted to see him that day as well. So I gave Jed a lift over to Maidenhead, then drove back and picked up my brother from my Mums in Wokingham. We stopped off at the Pub for Sunday Lunch and then drove back over to our house. We got in and Mark wanted to check his email on his laptop, so whilst he did that I went to get some washing out the machine and that’s when my world changed.
As I went to take the washing out of the machine that’s when it happened. I felt what I can only describe as someone hitting me round the back of the head with a baseball bat. Not that I have ever been hit round the back of the head with a bat but it’s the only way I can describe it. I felt odd, really weird and stood hanging onto the sink trying to get my breath back whilst wondering what on earth was going on. I had the most horrendous headache. But I didn’t know what was happening to me. Strangely (and to this day I don’t know why I did this!) I took some nurofen thinking maybe I was just having a really bad migraine which I would get rarely, but they never felt like this.
I managed to get into the living room where my brother was and he looked at me and said “are you ok?”. I have to be honest I had no idea and think I said “my head really hurts, I don’t feel good”. I asked him to google the phone number for the out of hours doctor service, which he did and I called them explaining what had happened. They took my details and promised to call me back. I can’t remember how long it took for them to call me back but I remember lying on the sofa with a blinding headache feeling like I was going to pass out. I didn’t thankfully (I since found out 50% of patients who pass out don’t make it). They asked me if there was somewhere with me who could drive me to hospital but my brother couldn’t drive. But he had already phoned my mum who was on her way. People still ask me why I didn’t call an ambulance and I can honestly say at the time I had NO idea what was going on. There was no visible signs of injury and I genuinely just thought I was having a really bad migraine. Had I known what was really going on I would have called 999 straight away – hindsight huh!
The man on the phone told me to get down to the hospital straight away. I had to call Jed, I had no idea what state he would be in, but I knew something was badly wrong at this point. I remember calling him and him asking me what was wrong and all I could say was ” I don’t know what’s wrong but my head really hurts and I have to get to hospital now”. He said he would be there as soon as he could and as I put the phone down it occurred to me I was supposed to be picking him up again and he would have had a drink, and how would he get back (trust me it’s odd what you worry about!)? As I put the phone down my mum was there and we headed out to the hospital in her car which was approx. a 7 mile drive. It was the longest 7 miles of my life. My mum is not a fast driver at the best of times and again it was a really foggy night, which was making her nervous in the process, coupled with a daughter who was writhing about the front seat clutching her head saying she had no idea what was going on. I can’t imagine what my mum, brother and Jed were thinking at the time.
We got to the hospital and I remember walking in and seeing a sea of people and wondering how long I would have to wait. I was seen straight away – taken into a side room and the lady doctor examined me and asked me loads of questions whilst I clutched my head in pain. I can honestly say I was in agony. I remember her saying to me at the time that she thought it was either meningitis or a bleed but it didn’t really sink in. They moved me over to the Critical Decisions Unit and put me in a side room. By this time Jed had arrived. A friend of his who wasn’t driving gave him a lift from Maidenhead. I remember Jed joking with me that he haven’t even had his Christmas pudding yet, and that I could have waited 🙂 I think I was put into a hospital gown (although my memory is hazy) and then they started trying to get bloods from my arm. I remember yelling at the nurse because she really hurt me and I heard her tell her colleagues “her veins have all collapsed and I don’t know if I can do this”. Eventually they did manage to get some, then they rushed me off to have a CT scan. They brought me back to the side room and I can honestly say I felt bloody awful by this point.
It was also at this stage that the throwing up started. I wasn’t prepared for that. But due to the bleed it messes up your brain signals and persistent throwing up is another side effect and lasts a good few days. In the midst of throwing up my most vivid memory of it all was a doctor coming into the room to give me the prognosis. I remember he was wearing a bow tie and despite being quite young was what I would call “old school” and he was very posh. I remember him telling me, quite matter of factly, that the CT scans confirmed it was a bleed on the brain and that they had called the John Radcliffe Hospital Neurosurgery Unit in Oxford, which would be where they were sending me the following morning. And that they would check whether I had an aneurysm or something more sinister going on. In the meantime there was nothing much to be done except keep hydrated and in a quiet place.
Upon leaving us with that news he then promptly left. I still didn’t really understand what was going on and was absolutely terrified that I was going to drop dead at any minute. I continued to throw up persistently. Eventually the hospital confirmed that the ambulance would pick me up at 8am on Christmas Eve and transfer me to Oxford for specialist treatment that my hospital couldn’t provide. I persuaded Jed to go home around midnight with strict instructions to pick up the Christmas “bird in a bird in a bird” we had ordered from M&S for Christmas Dinner at 8am and then meet me over at the John Radcliffe – like I said before it’s ridiculous what you worry about in these circumstances! It still hadn’t really sunk in what was going on and I was convinced I would be discharged on Christmas Eve and be sitting at home eating turkey on Christmas Day – how wrong was I!
I didn’t sleep well that night, my head was agony and the persistent sickness was horrible. Then around 3am a nurse came in and started moving the brakes on my bed. I asked him what was going on and got told “we need to move you out into the ward because we have a patient who needs to be in isolation who needs your room, we are short of beds”. I was then moved into the middle of a mixed ward (still find that odd!) next to a poor lady who was reliant on an oxygen machine which was very loud, and a poor old man who persistently coughed all night. And strangely all the lights were on in the ward. I was given anti sickness tablets (which I threw up again about 20 mins later!). At this point I really couldn’t tolerate any light whatsoever and put my scarf over my head along with my coat. It was a long noisy night and then around 7am they brought breakfast round. I was nil by mouth and I thought the lady serving up breakfasts was a nurse and when she asked me if I needed anything I burst into tears and said I needed some painkillers and when was the ambulance coming? All she wanted to do was give me toast and tea! I will never forget her kindness, she could have just told me she didn’t know and carried on with her job, but she went off to find a nurse and sorted me out. I thanked her by throwing up over her. It really wasn’t my intention and I was mortified!
Exactly at 8am 2 Ambulance ladies were standing by my bed getting me ready to move me to the John Radcliffe. I was never so happy to see anyone in my life (well ok apart from the time I met Steven Gerrard!). I just wanted to get off this awful noisy ward and to somewhere that knew how to treat me. They gave me anti sickness injections at that point but explained that nobody goes for a 40 minute journey in the back of an ambulance and doesn’t throw up! There was a big debate about whether they should blue light me in or not but I asked them not to turn the siren on because I couldn’t take any more pain/noise. They obliged and turned off the siren but kept the lights flashing! I only threw up twice in the ambulance which they seemed quite pleased about! Whilst being transferred to the ambulance I rang Jed to tell him that I was on my way and could he make sure he picked up the “bird in a bird in a bird”. He told me he already had (just to shut me up) and was on his way to Oxford with my mum and my brother. I still have no idea why I was worrying about the Christmas Dinner more than myself at this point!
We got to the John Radcliffe Neurosurgery unit around 9am and I remember Jed and my mum and brother were already there. The consultant met me at the doors and took me through to a side room. The whole ward was eerily quiet. The consultant told me he had looked at my CT scans and thought that I had an SAH and that I was lucky because I was still here. That’s when he told me 4000 people a year have them in the UK but 50% don’t survive. I think that’s when the seriousness of it all hit me. He told me they were going to take me down to theatre and perform an angiogram to check what was going on. The nurses got me prepped and I remember one of them asking me if the hospital had made me lie down flat during the night to take the pressure off the brain and kept me in the dark – I told her no they had me half sitting up for most of the night and I was in a well-lit ward. I remember her shaking her head and saying she was sorry and they shouldn’t have done that.
The angiogram was really strange. You can’t move throughout the whole procedure, there is lots of holding your breath and being completely still, and I was terrified I was going to throw up (although by this point they had ramped up the anti sickness medication). I remember they injected the dye through my groin and how odd it felt. When the dye reached my brain the doctor told me not to panic but I would see what looked like lots of little lightning flashes. He wasn’t wrong.
They wheeled me back up to the ward and on the way the Doctor confirmed I had an SAH however I was lucky and there was no trace of any aneurysms left or tumours and now we had to focus on my recovery. I remember being wheeled back up to the room and seeing Jed at the door and telling him it was all going to be ok. I have never been so relieved. The consultant told me I would be in hospital for around 5 days and my recovery would be keeping me hydrated, medicated and ensure I got some rest . They explained it would take time for everything in my brain to heal and settle down. But there was no reason why I wouldn’t make a full recovery.
AFTER THE BANG
My memory of the rest of Christmas Eve is hazy. After an angiogram you have to lie flat and still for a minimum of 6 hours because you could bleed out from your groin, as they go through a main artery with the wire. I think I slept most of that day in between throwing up. I really don’t remember a lot about it. I do remember Jed taking my mum and Mark home so they could get some food in for their Christmas dinner. They were supposed to be coming to us on Christmas Day and they had nothing in the house. Although mum told me later she got some great bargains in Waitrose as it was near closing time and they were selling everything off cheap! Every cloud!
I was woken up around 1am by a nurse who wished me a happy Christmas – I remember thinking I hope you haven’t just woken me up to say that! But he had come in to give me some medication that I had to take every 3 hours. He came back around 4am and then again at 7am. The hospital had left a present at the end of my bed which I remember thinking was really sweet – it was shower gel which I found quite amusing! At least it wasn’t socks! Then it hit me that it was Christmas Day. I lay in bed with my door open watching people coming and going with bags of presents for their loved ones and throwing up intermittently. But the thing I remember was that the ward was still eerily quiet. Apparently us brain patients are a quiet bunch! At some point in the afternoon ( I don’t remember exactly when!) Jed, Mum and Mark turned up. Jed was trying to be upbeat and “normal” and had brought me in a couple of presents. We had decided not to do presents that day, I wasn’t up to it and wanted to wait till I was discharged and felt better. So we put Christmas Day on hold. I felt really bad for them having to sit in this room making small talk with me. But then around 5pm when they went to leave I didn’t want them to go. It was at that point I asked Jed if he was coming back – we joke about it to this day. He had planned to take my mum and brother home then just collapse on the sofa, he was exhausted. And I forgot I was an hours drive away from home, and selfishly didn’t want to be alone on Christmas night. So when I asked him if he was coming back I could tell from his surprise that he wasn’t planning on it, but he said he would! And he was true to his word. He lay on the bed beside me and we had some quiet time.
Some friends of ours had kindly invited him over to their houses for some Christmas dinner that night, and mum and Mark offered but he didn’t want to. He told me much later that he had gone home on Christmas night and opened a bottle of vodka and had a fishfinger sandwich instead.
The next few days were spent sleeping, throwing up (but not quite so much now), staying on a drip and being given regular medication every 3 hours. My bed was by the window and right by the helipad. I spent the days watching the helicopter coming in and out all week. It was a strange distraction. But I wasn’t up for reading and this was before we had I pads, i player and kindles. Not that I was really up for that either. One of my consultants (Dr Tim as we call him) was looking after me and Jed met him in the lift one day and said something along the lines of “you are one of the docs looking after my girlfriend aren’t you?” and he replied “yes I am one of the consultants keeping your girlfriend alive” – that was pretty sobering. We still joke about Dr Tim to this day – he was a young doctor and quite easy on the eye! I kept pointing out to Jed that I really wasn’t looking my best, hadn’t washed in days, greasy hair and sick everywhere – not my finest hour! Dr Tim is still at the John Radcliffe, in fact he was on a tv programme about Brain doctors earlier this year. In my eyes he can do no wrong. He did keep me alive and I will be eternally grateful for that.
On Day 5 Dr Tim came to do rounds in the afternoon and told me I was being discharged and could go home that evening. Although I knew it was coming, I was still in denial. I didn’t want to leave the safety of the hospital. I was terrified and didn’t know what to expect. I had a bit of a cold as well and just wasn’t feeling ready to go home. He sat down with both of us and listened to my fears and tried to put my mind at rest, but I still wasn’t convinced. He told me to make a doctor’s appointment for the Monday, as I would be discharged into the care of my doctor. It’s so strange, one minute you are lying in a hospital bed hooked up to a drip being given 24 hour care, the next you are up and dressed and about to get in the car and go home. I remember the drive home felt longer than it normally would and it was dark and all the headlights hurt my eyes and gave me a headache. I just wanted to get home without throwing up. It felt like a really long journey. When we got home Jed put me straight into bed and told me he had to go out to get some food for dinner and did I want anything. I was starting to get hungry at this point in the week and needed to eat proper food again but I didn’t want to be on my own. He promised he would be quick.
They say there is nothing quite like your own bed and when I got into bed that night the familiarity gave me a huge amount of comfort. Finally I was home and in my own bed again. I fell asleep almost immediately and it was wonderful. Jed woke me up around 8pm and had made sausage and mash. I wasn’t sure I could manage it but I wolfed it down to my surprise. I hadn’t really eaten all week (my Christmas Dinner consisted of a bread roll which I promptly threw up again!) and wasn’t sure if it was a good idea or not. But for the first time in a week I ate and kept it down. I went back to bed and set my alarm for 1am for my 3 hourly medication which I had to do for the next 3 weeks.
The next day on New Years Eve, before my brother went back to Bristol, we decided to have our Christmas Day. There were presents still under the tree and Jed had gone out and bought a turkey and done all the trimmings. I still didn’t feel 100% and just before he served up the turkey I threw up. So I sat and watched everyone else eat and then we opened some presents before Mark headed home. It was just nice to be home but I was still terrified. Then over the next few days as word had got out I was home friends came over, some left magazines on my doorstep and people called to check up on me. I even caught up with my best friend from school, Helen, who I hadn’t seen in a really long time. She brought her girls and her mum and we had a little cry and caught up. It wasn’t the best circumstances to see someone in but I was so glad to see people again. A lot of friends and family didn’t really know what state I would be in – when you say you have a brain injury perceptions can change. But I didn’t feel any different, I was still me and I was still here.
I saw my doctor the following week and continued to see her every week for quite some time. Unfortunately nobody in the surgery knew anything about SAH as they never had a patient before who had one, so she spent a lot of time on the phone to the John Radcliffe finding out information for me and working with me. I have to admit every time I visited her I sat in her office and cried. I was still terrified and she suggested I might have post traumatic stress. Looking back she was probably right but I had enough to deal with without having that as well. She also told me that my driving licence had to be suspended, which was something that came as a shock, whilst they investigated my prognosis. Even though I had no intention of getting in a car for a while it was like my freedom had been taken away and I had to rely one everyone else. It was a couple of months before the DVLA decided that I could have my licence back. My doctor and I decided I wasn’t ready to go back to work and that we would take it a few weeks at a time. I ended up being off work for 3 months but in hindsight I went back too early (dam that hindsight again!). I was still being monitored by the John Radcliffe and had to go for MRI scans for a year after it happened. I hated the MRI scanner – it was so noisy (anyone who has had one will know what I mean!). I am dreadfully claustrophobic and every time I went in the scanner I would cry for the duration, which wasn’t ideal as you are meant to stay still! Eventually after a year I was discharged. I hated going to those outpatient appts. I knew that there were people in that waiting room with much worse conditions than myself, and it was always a tense and quiet waiting room.
Eventually life returned to some kind of normal but it wouldn’t ever be the same again. I had very little side effects. I got quite dizzy (although some might say I already was a bit dizzy!) and forgetful. And I am probably a lot more intolerant than I used to be. Some would argue that was an excuse but I have done some extensive reading on the subject of post SAH and side effects and it seems to be a common theme.
In comparison to other SAH sufferers I was very lucky as I didn’t have to have shunts or endless brain ops and I didn’t lose my life. However I firmly believe when your number is up it’s up and there is nothing any of us can do about it. My number simply wasn’t up that day.
So as me and my brain approach our 7th anniversary I always think of the people who helped me during that time and for the people in my life it affected. Because although it happened to me, it had far reaching effects on other people in my life. I do know that without them all I would never had the strength to get through it. And laughter really can be the best medicine during some pretty dark days. We weren’t being flippant just trying to find the humour in some of the situations that came up during that time.
One thing is for sure we have never ever wanted to have “bird in a bird in a bird” for Christmas again and every head bang anniversary I never go near the washing machine!
That day changed me forever. I realised with a big jolt that my life is not in my hands and to appreciate what we have right now. From every wound there is a scar, and every scar tells a story. A story that says I survived.