In 2012 I was diagnosed with a terminal brain tumour - Glioblastoma Multiforme Grade 4.
This is my story.
In 2012 I was diagnosed with a terminal brain tumour - Glioblastoma Multiforme Grade 4.
This is my story.
I know that my blog has been up and down for a while now - but III have recently changed the way I will be publishing it - so it should be a whole lot more stable now. So If you haven't read it yet it is below and I am in the proceess of writing my next post. So stay tuned.
Thank you all so much for your support!
So here goes.
For Starters I’m not really doing this for the person reading it, more to try to come to terms with what has happened to me over the last few months – for me.
So I will start at the beginning. It all started on the 10th of September at work where I felt the early signs of a migraine. My vision pretty much completely went with watery grey spots all over, and an astounding headache that could have killed a bear. I have had a few migraines like this in the past so thought nothing of it. I woke up the next day and it was still there – no change whatsoever. Roll on Thursday when it got to the stage I had a very, very bad migraine and an epic nose bleed. I phoned Steph while she was at work and told her I would need her to take me to A&E that night. I was feeling quite nauseous on Thursday and thought a 4 day migraine was definitely not normal.
Thursday in the Hospital
The doctor in A&E was friendly enough but failed to spot the signs that a 4 day headache and loss of vision was certainly not normal. I was given Codeine Phosphate tablets (awesome btw) and was prescribed some anti-nausea tablets as “they didn’t have any in the pharmacy”. They did manage to give me Codeine and the anti-nausea tablets while I was in hospital alongside an hour of oxygen – which did clear up my headache, but to be honest that could have cleared up the pain of a burns victim, I was that high.
Roll on Friday which I woke up with my symptoms again. Not hugely severe but still bad enough to notice. I slept for most of the day and woke up around 10PM to be violently sick, which continued until the emergency doctor was able to come to the flat at around 1AM. He again gave me 2 injections – one for the pain one for the endless spewing I was doing.
Saturday and Sunday were not too bad but my vision was still not right – I spent most of the weekend on anti-nausea tablets and codeine – which was great! I struggled to cross the road on Monday to meet my mum and dad who had come to pick me up from my flat because I needed to go and see my doctor as I didn’t trust the previous diagnosis of “oh it’s just a migraine – it will clear up eventually”.
I couldn’t see a thing, I tried to not look too helpless to my mum to try not to scare her, but I seriously struggled crossing roads and even seeing people’s faces. I saw my doctor who said I needed an urgent eye exam to check behind my eyes (something which should have been done last Thursday) and he sent me on my way, I decided to go to the Royal Hallamshire Hospital in Sheffield as this is where I have my contact lenses fitted and my checkups for my eyes done. I called them and they referred me to the emergency eye clinic.
I arrived at the eye clinic and spent 30 minutes shitting myself, while the dilating drops took effect in my eyes. The nurse literally looked for 20 seconds in each eye and immediately said there is something not right in your brain as there was swelling in my discs behind both eyes. She said it could be something that is more common in women (sort of a headband headache across the circumference of my head) or something more sinister.
I had photographs taken in both of my eyes, and a CT scan which revealed the mystery to be a tumour/cyst inside my right hemisphere of my brain. I was immediately admitted into hospital.
I spent the night in the Admissions Assessment Unit (basically a stroke ward)where an absolutely lovely man called Pete (aged 72 I think) in the next bed kept me company, and comforted my mother before she left for the night by giving her a lucky penny that he found and apparently brought him good luck – I’m not a believer in superstition or “luck” but I thought the thought of it was amazing and it really made my mum smile on a day that had managed to turn my entire family’s life upside down. Everyone was distraught on this day as we knew very little about what it was and we needed to wait until Tuesday to speak with specialists about what it was.
Monday night in the hospital was the first night I had ever spent in hospital alone and it wasn’t bad to be honest, I missed my family and someone familiar to speak to, but apart from that the nurses and most of the patients saw how young I was and tried to do everything they could to comfort me. I slept fairly well on the Monday night apart from a little disturbance at 3AM when a very drunk old man was admitted to the ward and announced at the top of his lungs that “he didn’t give a fuck who else was in the ward, he just wants his whisky”.
Tuesday morning I woke up and my mum and dad arrived at about 07:30 even though visiting hours were not until the afternoon, but that’s how my family do things… And I don’t blame them for that. Today was the day I would get some light shed on what was actually in my brain causing me to lose vision and have epic headaches. The nurses told me a Professor would be down to see me at some point during the day to tell me what was going on.
Professor Shaw came down to see me, I forget the time, but I remember it was in the afternoon. She was accompanied by 4 students training in this field where she told me I had a mass in my brain similar to the size of a golf ball, and that because it was pretty much spherical it was more than likely a cyst. This wasn’t as bad as it sounded all things considered however I broke down and so did Steph and my Mum. It seemed at the time to be earth shattering news as I had not known up until now that there was something in my brain, and cystic, benign or cancerous, it was fucking scary.
After an hour and about 40 cigs, I calmed down and was OK again. I started making calls to people to inform them of what was happening, purely because it hadn’t sunk in for me yet, so I thought telling other people might help that process and more importantly help me.
I was also told on Tuesday that I would actually have to be admitted to the neuro-ward. We seemed to be waiting all day for this to happen and it eventually did, at around 10PM. The ward I was moved to was really nice and clean and it also seemed slightly modern, although there was no Wi-Fi access anywhere in the hospital – Jesus, are we living in 1863?! I settled in for the night and awaited tomorrow, one of the worst days of my life so far (you’ll see later why I say “one of”). At this point I was still having to call the nurses to take me to the toilet as I could not see a thing.
Wednesday – the first day everyone starts using the fucking term “The waiting game” – and, might I add – I hated that term, still do. “The surgeon – Mr Jelinek (I shit you not) – Will be up to see you at some point today to discuss the surgery you will be having to remove the brain tumour. I had to rush to have a shower, rush to have my hourly cig, rush to go for a piss, be constantly on edge all day, until around 10PM when my Auntie Tracie, Mum, and Steph were left at the hospital debating what to do as the nurses were still saying he could come at any time, he’s a surgeon and can do what he likes – smashing. Needless to say he didn’t come on Wednesday, after a full day on edge, wondering should I be eating or should I be null by mouth, or whether he was just coming to tell me yeah, it’s probably not a cyst, but a cancerous tumour (something that hadn’t been mentioned at all and wasn’t until I was discharged).
Thursday morning and I am awake by 5AM with all the farting, belching and snoring being done on the ward. I think to myself, the surgery has to be today, so quickly stuff a Daim bar and a load of Fanta Fruit Twist down me before anyone can tell me I’m null by mouth. An hour later the “surgeon” (who looked younger than me – and I thought could really not be a surgeon – he wasn’t the surgeon) comes into my ward and has a chat with me. I start shaking uncontrollably for no apparent reason, and do not shed a single tear. I was too nervous to remember anything to ask of importance. He goes through the standard anaesthetic consent form with me and all I hear is – “there is a chance you could lose your eyesight altogether because of where the tumour is, and there is also a chance you might die – please sign here.” I sign it but have to have the consent form literally inches from my face before I can see anything.
I was now null by mouth
My mum and auntie arrive at about 8AM and I tell them they’ve missed him, but I’ve asked him to come back so he can explain to them too because I probably missed anything of importance. I tell them the 2 things I can remember and immediately started to cry. I was at a point now where I literally couldn’t take any more bad news, the week had already gone so quickly, and so badly, I honestly didn’t think it could get any worse. The surgeon’s apprentice came back and had the same chat with us all again, and told me I would be going down for surgery at around 2PM, he also said that if he was going to have a brain tumour, the place I had mine is the place he would want to have it. This gave me a slight amount of hope.
Markers surrounding the mass in my brain, letting them know where to cut
There was a very real chance I could have died in surgery, so ALL of my family came through to see me this day. I was only allowed 2 people at a time on the ward so was talking to people 2 at a time which was the hardest part throughout the whole ordeal so far. I talked to my brother, Daniel, who looked absolutely gutted and terrified by what was happening, and cried. It was so difficult to stay strong for him, to give him the hope that I would be OK, and that I would be back tormenting him in no time. He left my bedside and went into the family room that had been taken over by my family at this point, and immediately I started to cry uncontrollably, I had been strong all day but now I literally just could not take it anymore. My dad came in shortly after my brother left. My dad has famously never been one for words or emotion, but I had seen an immense change in him this past week since the start of the “bastard” ordeal. I told him I was terrified and fed up of being strong, and brave. He hugged me and we both just cried. This was the first time I had ever seen my dad cry, which made it even more difficult for me. He had told me the last time he cried was when I got knocked down when I was 14. The pain was unbearable.
2PM came and went, but I was used to the hospital and their schedules now. I eventually ended up going for surgery at around 3PM. My mum had asked me who I wanted to walk down to theatre with me her or Steph. Which was like choosing between my right arm, or left arm. I said initially I wanted both of them to come down with me, but the porters that came to collect me and do the “final checks” said only one. So Steph came down with me, and I had to say the hardest words ever to come out of my mouth – ” I will fight as hard as I can to come back, but if I don’t, I am sorry and I love you”. Looking back now it seems slightly silly but at the time, death was very much a reality.
One of the theatre nurses asked me to check my consent form and see if it was my signature, but as usual I couldn’t see a thing, so I just said yes and was whisked away into the anaesthetic room after a heartbreaking goodbye from Steph. The anaesthetic team were really amazing, kind and thoughtful and really made me feel in safe hands. The last thing I remember was having the anaesthetic pumped into my hand and saying it hurt quite a lot, the anaesthetist then started to tap and rub my hand and I said thank you. The next thing I knew I was gagging on the breathing tube being pulled out of my throat and violently shaking. The nurse gave me tranquillisers to calm me down and I stopped shaking and started to warm up. I was being driven through a corridor and saw all my family waiting for me and decided to give them a double thumbs up, they laughed.
I was put in the intensive care unit as I needed to be watched for at least 24 hours, and I was still full of tubes. All of my family came in to see me 2 by 2 again as in the ICU they really only could let 2 people in at a time. I said to each of them “I told you I would be OK” even though I really didn’t and for the last day thought I was going to die, and they knew this. They all had to leave me again as I needed rest and to be monitored hourly as I’d had brain surgery, something I never thought I would have or even wanted to have to be honest. “Who is the Prime Minister? Which hospital are you in? Who is the President of the USA?” were the three questions I had to answer every hour. My initial response was “it is a good job I know already isn’t it?!”. One of the nurses at about 3 AM thought it was a good idea to mix it up a bit and say “what is my name?” to which my response was “how the fuck should I know!” he was slightly amused by this and said it is Simon, please remember it from now on. I did.
I don’t know whether it was the fact I was being woken up every 30 mins by questions and beeping from machines (mainly mine) or whether it was the huge syringe of morphine they gave me, but, I was hallucinating rather a lot throughout the night. I kept thinking the woman in the next bed behind the curtain kept calling the nurses over and telling them I was shitting in the bed. I wasn’t. I had just had brain surgery, and couldn’t think straight.
I woke up to the sound of nurses shouting at a patient trying to masturbate at about 2AM, they shortly resolved this by putting boxing gloves on both hands, this amused me greatly, and I knew I was still normal and OK at this point.
I woke up the next morning to quite a large headache, and a tub full of bloody, juice between my legs (see below). This was the brain drain I had to have in to stop my face from swelling up like a planet. Life on the high dependency unit was pretty grim, I woke up the next morning and still couldn’t see very well at all but they said it would take a while, if at all, for my eyesight to come back. A nurse came around very early and asked what I wanted for breakfast; I was starving but couldn’t open my mouth wide enough for anything substantial. I had Weetabix, with sugar, and had to be fed it.
Before lunch I had a bed bath (wasn’t even kinky) the male nurse sorted out my cock and balls (sorry I couldn’t think of a better way to say it), and the female nurse shoved a flannel right between my cheeks. It was quite strange putting the trust in these two, effectively strangers, to wash me, purely due to the fact that I was so unable to do it myself; this wasn’t the last time this had to be done during this hospital visit. The male nurse also had to pull out my catheter. Now let me tell you something. Pain is subjective; it can be controlled if you think about it, but having something as big as a pencil pulled out of your japs eye really fucking hurts. It was the worst pain, ever.
I will leave this here for now because I am coming up to 3000 words and I don’t want you to get bored. So will do updates per each day I was in hospital from now on. But for those of you that don’t know:
The long and short of it is:
I have cancer; the tumour they removed was a grade 4 glioblastoma multi-forme – aka, Terminal.
It will kill me one day, sources on the internet say I have 12-14 months, I say fuck you.
I would firstly like to start off by telling you how completely overwhelmed and humbled I am purely by the number of hits the last post got. Didn’t expect it to strike a chord with so many of you! This is partly why it has taken me so long to actually sit down and write the next part. So firstly, I have some blanks to fill in…
The surgeon said to my parents just as he came out of surgery that the operation went very, very well. This gave my mum and dad a glimmer of hope. All be it false hope. The word cancer was not mentioned at all in the whole week I was in hospital.
Here is my lovely 9 inch scar with 40 staples in it holding it together
The tumours that the surgeon removed were a cancerous glioblastoma multi-forme grade 4 (about the size of a tennis ball) and a cyst the size of a golf ball. This caused a lot of pressure in my head and was the ultimate cause of my loss of vision and severe headaches.
I was finally let out of the hospital on the Sunday following on from the operation on Thursday. Cameron’s Britain eh. Brain surgery and then out of hospital 3 days later. I was happy about this because I was sick of the smelly, belchy, farty old men they kept putting me in wards with. What does one have to do to get one’s own room in a hospital these days?
Seriously though I was so happy to be home – well at my parents anyway.
I knew as soon as I got to my mum and dad’s house I would have to give up my flat. It wasn’t perfect – it had its flaws, not least the fact it was pretty much a tin shed on top of some other flats. But it was my home. I was devastated by the fact I would have to give it all up. I had to give my life up. My car, my flat, my job, my freedom all gone within a week. If I had been arrested for murder I don’t think they could have took it all away from me more quickly! Honestly I was devastated, a year after leaving university with the best grade I could and I get 1 year at being myself, a man, and *poof* its all gone.
I remember having my Sunday lunch at my mum’s and I ate the lot! I have never done that before (I know I’m a bit of a “chubber”, but it may surprise some of you to know I don’t actually eat that much). Hospital food is shit.
Very swollen right eye after they took the brain drain out on Saturday, this is me at the dinner table on Sunday.
I knew I would get the results from the biopsy of the tumour to find out what had caused it to flare up, the following Thursday. All I knew at this point was that I was banned from driving for six months “because I had brain surgery” – this was soon to change. I was apprehensive to say the least at the prospect of being told what was actually wrong with me.
I had considered the fact that it may be cancer. The very worst I thought it could be was cancer. I was coming to terms with the fact it may be cancer. All I thought it could be was a few blasts of radiotherapy and some chemo and then after a year or so, back to normal. All ok. How wrong could I have been?
The floor tiles were dirty and arranged in perfect squares, the walls were an off shade of mint, and the ethernet cable coming out of the back of his computer was blue. I made a right cock of myself walking into his room. I went and sat at his desk in front of his computer as though I was going to fix it for him. He needed to fix me. The surgeon was a very blunt man, matter of fact, straight down the line, no bullshit. He asked me if I had seen the scan, and I hadn’t – I didn’t want to. So he started drawing what was on the scan – he might as well have just shown me the fucking thing.
“We grade cancers from 1 to 4 – 1 being the least aggressive kind and 4 the most aggressive kind” – “unfortunately yours is a grade 4 glioblastoma multi-forme” – “and it will come back – we just don’t know when”
All that was going through my mind at this stage was don’t tell me how long I have got left – PLEASE!
“it will kill you” - Smashing. I was just still and silent, I heard a faint wimper from my mum – who was sat next to me listening to a highly qualified man telling me I was going to die.
I didn’t cry. I needed a cig, badly.
The macmillan nurse gave my distraught mother an information pack – which might aswell have said “so you’ve found out you’re going to die” on the front of it. It contained vast quantities of bullshit. I want to make a better pack to give to people who are given devastating news – a pack of tissues. This was all we needed. I drank a cup of water, and contemplated the idea of death at 24. The first time ever in my life.
I got home and was numb. I sat on the reclining chair in the living room – un-reclined. The last thing I needed was comfort. The rest of the day was pretty much a blur. Except from a couple of instances that will remain with me for the rest of my life, however long or short it now has become.
I had already told Steph on the phone that it was cancer – the quote from Steph was “did they actually say the word cancer?” I think this was the despair speaking more than anything, one last hope – they did but I hadn’t told her the full story. I told her it was cancer but I “should” be ok, she needed to come home from work so we could talk more about it. I said not to panic but we really needed to talk about things. By this point I hadn’t been back to the flat and Steph was staying there alone, until we found out what was happening.
She walked in the house and we just hugged. I sat on the sofa across from her and said “it is going to kill me, they just don’t know when”. I had seen this look of utter despair before, it was the same heartbroken look I had seen just hours before from my mother, one I would have to get used to. It hurt me more to see me hurting the people I love heartbroken and utterly at a loss for words, empty. We had been together at this point about 3 and a half years, she is everything to me, and to see her so upset was dreadful. If I ever have to go through anything like that – I will give up. This was the worst thing about it all, I don’t mind the fact that I am dying, at the end of everything we are all one day closer to death each day, I just know how I am going to die, still not the worst thing the utterly, monumentally, catastrophically worst thing about everything was that I was going to have to watch my family and the ones I care about ever so much – watch me die. Seeing them upset kills me every single day. This is how I know I am dying, seeing my loved ones hurt. I wish I could deal with this alone.
My brother walked in from college fairly happy, I think he must have forgot the fact that I had gone for my results today. He was talking about college to me and my mum – who both had dull expressionless faces – he knew something wasn’t right. I asked him to come in to the living room as I needed to talk to him. This was the first of many loved ones I would have to tell that I will die – sooner than expected.
We didn’t sit, I stood in front of the TV and said to him “I got my results today” – he said “and” I just cried. We hugged for what seemed like 3 seconds. I didn’t want to let him go. It really fucking hurt. I am actually in tears writing this. I finally stopped crying enough to tell him the details – again what the fuck was a 17 year old boy going to cling onto about this. I was going to die, that’s all he cared about. I could see he was heartbroken. I was too. It would have been far worse for me to hear the news that he was going to die. He sucked it up, like the amazing person he is. Nobody at any age should have to be told their brother is going to die. It was at this moment I realised I loved my brother to pieces – I never really thought about it before, but he is amazing – and Danny – when I’m gone, remember how much of a shit I was with you, how much I tormented you and how much you hated me when I would randomly come into your room and throw your socks and toys around. More importantly, remember how much I love you. You will be an amazing man.
I cannot give up. For the sake of the people I love and I will not give up. Ever.
People say the more you say things, the easier they are to say. “Everybody lies”. It never gets easy and trust me on this one, because I have told hundreds even thousands of people, it never gets easy.
My family are optimistic people. Whilst I was in hospital they never expected anything like this. The surgeon said the operation couldn’t have gone any better, and they thought that was it after the op. “On the road to recovery” – was a quote my dad used – I remember this vividly and he still gets angry about it to this day.
My Amazing Family
I had huge ambitions for my life. I wanted a house, a car, a wife, my own children, and a good job where I could provide well for my own family – I was on my way to these ambitions. Ok so they are not huge ambitions – but normal ambitions, everybody dreams about having the perfect life, but I honestly think I could have achieved it. Maybe not now, but I intend to carry on living my life and not being depressed about the incredibly shitty news that I have had delivered. My life will never be the same but it will be a fucking good life. The rest of it anyway.