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 it’s not always easy to talk about. 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. I guess a form of therapy for me really.
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 friend of mine. A friend who also happens to be Man Utd fan and I am a Liverpool fan. This always makes our friendship entertaining and slightly challenging! 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. It was very close to Christmas, my brother was coming up from Bristol on the Sunday and I wanted to spend some time with him whilst getting the final Christmas stuff organised.
So after the Liverpool game (we beat Southampton which was a bonus!) we headed back across to Manchester on the train and I decided I would drive home that night. To this day I still think about what might have happened if I had stayed up in Manchester after all. 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. For some reason only known to our motorways coming back down the M6 is always a ball ache no matter what time of day it is! But I got home around midnight so not too late.
The next day my partner was going to a Christmas Lunch with his mates. I had been invited, but my brother was over, and I wanted to spend time with him before the madness of Christmas Day was upon us. So I gave Jed a lift over to Maidenhead fully expecting to pick him up around 5 hours later in a more sorry state than when I had left him! My brother and I headed to the pub for a spot of Sunday lunch after that he came back to ours. Whilst we were chatting I decided to take the washing out the machine (yep always a domestic goddess!) and as I was doing that my world went bang.
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 I hasten to add, 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 the hell just happened. I had the most horrendous headache. But I didn’t know what was happening to me, I had no idea. 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 really bad headache!
I managed to get into the living room where my brother had settled down and he took one look at me and asked if I was ok? I have to be honest I had bloody idea at that moment if I was or wasn’t! I just knew my head REALLY hurt and I felt really really odd. 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, it wasn’t long but I remember lying on the sofa with a blinding headache feeling like I was going to pass out. Thankfully I didn’t and I since found out 50% of patients who pass out don’t survive, they go into a coma and never come out of it. I remember the doctor asking me if there was somewhere with me who could drive me to hospital. 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? At the time I had NO idea what was happening to me. There were no visible signs of injury and I genuinely just thought I was having a really really bad headache. Had I known what was really going on I would have called 999 straight away – hindsight huh!
The doctor on the phone told me to get down to the hospital straight away. I had to call my partner, I had no idea what state he would be in, but I knew something was badly wrong at this point and he needed to get to the hospital. 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. As I put the phone down it occurred to me I was supposed to be picking him up again and how on earth would he get over to Reading? Also he would have had a bit to drink by then so I had no idea what state he would be in. That particular lunch was always a boozy affair! Trust me it’s odd what you worry about when you are mid crisis!
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 (think Miss Daisy!) at the best of times and again it was a really foggy night, which was making her nervous. Coupled with a daughter who was writhing about the front seat clutching her head saying she was in agony probably can’t have helped! I can’t imagine what my mum, brother and Jed were all 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. Children were crying which was hurting my head more and I was totally intolerant to light. I was seen pretty much straight away and taken into a side room. The 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 and that’s when shit started to get real. 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 at least 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 screaming at the nurse because it was really hurting. I heard her tell her colleagues “her veins have all collapsed and I don’t know if I can do this”. That didn’t make me feel much better. I felt like a pin cushion whilst they attempted various points to take blood from. 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 really wasn’t prepared for that. But due to the bleed it messes up your brain signals and persistent throwing up is another side effect of an SAH, 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. He had NO bedside manner whatsoever. I remember he was wearing a bow tie and despite being quite young he had a plum in his voice – strange what you remember! I was throwing up when he walked in and I got the feeling this was a major inconvenience to him. He told me in a quite “matter of fact” way that the CT scans confirmed it was a Sub Arachnoid Haemorrhage (I honestly thought he said haemorroids!) bleed on the brain. I remember sitting there thinking WTF is that exactly. He then told me 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 as I knew aneurysm’s could kill you at any minute if left untreated. On top of that I continued to throw up relentlessly. It was not my finest hour. The hospital confirmed that the ambulance would pick me up at 8am on Christmas Eve and transfer me to Oxford for specialist treatment that they couldn’t provide. In the meantime someone (can’t remember if it was my partner or my mum!) had gone back and got me some pj’s as the backless hospital number was giving a few people an early Christmas present and they wanted to give me some dignity! I persuaded my partner to go home around midnight. I also remember giving him 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 on Christmas Eve, and then meet me over at the John Radcliffe – like I said before it’s ridiculous what you worry about in these circumstances! And it still hadn’t really sunk in what was going on. I was convinced I would be discharged on Christmas Eve and be sitting at home eating turkey on Christmas Day – how wrong I was!
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 moved me out onto the general ward because they had a patient who needed to be in isolation and needed the room. I was then moved into the middle of a mixed ward next to a poor elderly lady who was reliant on an oxygen machine which was really loud, and a poor elderly man who persistently coughed all night. Also they kept the lights on overnight because it wasn’t like a normal ward and people were being moved in and out all night. The noise and the light was unbearable. On top of that I was still chucking up for England. So I was given anti sickness tablets (which I threw up again about 20 mins later!). In the end I lay with my scarf and coat over my head to block out the light. It was a long noisy night. At 7am they brought breakfast round. I was nil by mouth and I mistakenly thought the lady serving up breakfasts was a nurse. Poor woman – 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 all over her. It really wasn’t my intention and I was mortified! Happy Christmas Eve!
At 8am on the dot 2 lovely Ambulance Technicians arrived by my bedside. I have never been so happy to see anyone in my life (well ok apart from the time I met Steven Gerrard!). I just wanted to get off the awful noisy ward and to somewhere where they 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 without throwing up so there wasn’t much hope for me! 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! I wasn’t so chuffed! 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 really 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. 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. That didn’t instill much confidence in me!
The angiogram experience was really strange. You can’t move throughout the whole procedure and have to lie totally still, even breathing at only specific times. I was terrified I was going to throw up (although by this point they had ramped up the anti sickness medication) and do myself some serious damage during the procedure. I remember they injected the dye through my groin and as the dye travelled up to my heart and then up to my head 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. Very very weird!
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 or tumours. So now it was time to focus on my recovery which mainly involved sleeping and rest for a very long time. I remember being wheeled back up to the room and seeing my partner at the door and telling him it was all going to be ok eventually. 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 resting . 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. I think I slept most of that day in between the joy of still throwing up. I really don’t remember a lot about that day. 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 even though the thought of a shower was the last thing on my mind! At least it wasn’t socks! Then it hit me that it was Christmas Day. That was horrible. 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. I asked the nurse why the ward was so quiet and she explained that us brain patients are a quiet bunch and that most are resting or in coma’s so not really up for activity!
At some point in the afternoon ( I don’t remember exactly when!) my partner, Mum and Mark turned up. We had decided to put Christmas Day on hold, I wasn’t up to it and wanted to wait till I was discharged and felt better. I felt really bad for them having to sit in this room making small talk with me, I always feel the same when hospital visiting other people! But then around 5pm when they went to leave I didn’t want them to go. It was at that point I asked my partner if he was coming back. We still 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. I also didn’t take into account that I was not exactly local to home! It was an hours drive away. 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 very close 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, opened a bottle of vodka and had a fishfinger sandwich instead. Not exactly the Christmas Day he had planned either, but hey I do love a fishfinger sandwich 🙂 I felt awful that I had literally ruined Christmas.
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 wondering what poor souls were in it and hoping they were ok. It was a strange distraction. There wasn’t much I could do and this was just before we had ipads and kindles. Not that I was really up for that either. One of my consultants (Dr Tim as we still call him) was looking after me and my partner 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”. He said that was a pretty sobering moment for him. We still joke about Dr Tim to this day. He was a lovely guy and the ward heartthrob. Dr Tim is still a Neurosurgeon and turns out he is a family friend of someone I know! It’s a small world. 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. I will never forget him.
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 I 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 my partner had gone out and bought a turkey and all the trimmings. I still didn’t feel 100% but was determined to have some kind of Christmas. However just before he served up the turkey I threw up. So I sat feeling sorry for myself and then we opened some presents before Mark headed home. It was just lovely 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. It had been a lonely Christmas as everyone was with family and friends or were ill with the Christmas cold doing the rounds, so my visitors consisted of Jed or my mum/Mark.
I saw my own 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 (damm 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 am so very lucky as I didn’t have to have shunts or endless brain ops and most importantly 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. I also think about 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 ever being flippant. We were 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 lunch again. It’s turkey all the way every year! 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.