Ben Gillott

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.

Brain Drain

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.