Day 24 – Tests, Fears and Living Out Your Nightmares

Yesterday was horrific. Truly awful. Up there with one of the worst times of my life.

Well apart from the tiny bits when we actually got to celebrate Danny’s birthday.

Before I explain more I should say one thing I probably wouldn’t read this if you’re really claustrophobic and/or have an MRI coming up. Claustrophobia is my only phobia and in addition to that I absolutely freak out when under extreme on-the-spot pressure. So lying in MRIs is really horrendous for me and exam style situations are equally as bad. Now lets combine the two and you have what I have now discovered is called an fMRI.

Unfortunately I didn’t know this was what an fMRI was until I turned up at the hospital and was being strapped into the tunnel of doom. The lovely Radiologist told me whilst strapping me in that it was going to take an hour and I had to look at a screen whilst inside and answer in my head (I wasn’t allowed to speak and move my mouth or any part of my head apart from my eyes) a series of questions designed to make my brain think whilst they scanned.

I explained both my phobias to him to which he replied “don’t worry they’re really easy tests and we won’t know what your answers are as they’re in your head although I do need to say how important this test is as it will help guide the surgeon to exactly where the tumour is and help protect everything else inside your brain”. Right. Aside from the fact this guy was actually incredible nice what a thing to say to someone who had just said they freak out at that kind of pressure. He also then said “between each test there will be a yellow cross on the screen and when you see it please just try and relax and not think of anything”. I actually asked him if he was taking the f*ing piss.

Convincing myself I just needed to breath and I’d be ok I let him press the button and in I went.

First test – Word Generation Game

At least they try and make it sound fun. For this ‘game’ I had to read the letter on the screen and think of as many words as I could starting with that letter. Sounds easy enough, I mean even Loli could probably do that. Except as I said I can’t handle on-the-spot pressure and my mind goes completely blank. I got a 1^stat Liverpoool University, even won a prize for the best dissertation but I don’t mind admitting this was because I was able to do the vast majority of my degree through coursework and not exams. Take me away from an environment where I feel a clock ticking or everyone looking at me and I’m actually not too stupid. Put me back in that environment and I’m as intelligent as a black Labrador trying to get through a closed door using the headbutting method.

Back to the game. The first letter was L. How many words could I think of for this extremely common letter. Two. Yep I could only think of Lolly and Letter. This is NO exaggeration. My mind went totally blank and I started to panic at the fact I wasn’t using my brain correctly. I just couldn’t think of a single other word beginning with L. Nada. Next letter B. I got five words, Bruno, Ball, Beavis, Butthead and Bravo. Wow. I absolutely promise to the best of my knowledge I have not thought about / watched / seen anything related to Beavis and Butthead in about 10 years. Why on earth they came up will baffle me for the rest of my life. And I actually thought Bravo was suitable in this instance. How ironic. This pretty much continued with a very light improvement. I think the most I managed was 6 or 7.

Finally it ended and up went that little yellow cross where I was meant to relax and not think of anything. So of course I spent the entire relaxation thinking what a total idiot I was and worrying if I had / am ruining the test and what that would mean in the surgery interspersed with shouting (obvs in in my head – don’t move that mouth remember) at myself to try and concentrate on my breathing instead. Oh and stop swallowing because I might be moving my mouth. Just SO relaxed.

Second test – I can’t remember the name sorry

For this test they give you a noun (object – yep that had to be explained to me too) and you’re meant to say a verb (action) that goes with it. For example, if the word they give you was ‘Pool’ you could say ‘Swim’.

I actually wasn’t as bad at this one and managed to think of answers for almost every one although my heart was still racing and my entire body felt like it was pumping with adrenalin. I also decided that the verb for Fist was Pump for again unknown ridiculous reasons.

At some point the tests stopped (I can’t remember if there were more) and the Radiologist came to get me. I was mildly shaking getting out and when I got to Danny in the waiting room I just said I hadn’t felt like that since I’d done my A-Levels and I needed to sit down and have a cup of tea. At least I clearly still remembered I’m British.

There may be trauma ahead

Next up was 4 different tests/scans rolled into one in another MRI in a different hospital on the same square for another hour. Thank god Danny had the foresight to force me to take my time, calm down and sit for a little after the last MRI.

When we got there the nurses and research Professor couldn’t have been nicer. They explained that whilst there I would be in the scanner for roughly 45 minutes, there would be lots of different scans happening and what exactly they were all for – lots of measurements and analysing chemicals from what I can recall. There would be no cognitive tests so I could just lie there with my eyes shut or I could open them whenever I wanted. I could also look via a mirror into their office and see them however at some point one of the scans would require a certain fluid being pumped around my body and they were going to have to insert a cannula. They also listened when I told them my fears and we discussed how communicating with me between each scan to let me know how long the next scan was and how much longer I had in total in the MRI would be a brilliant idea as it would help calm me down especially as my sense of time is so warped and the previous MRI was so tricky because I couldn’t work out when it was going to end.

They explained that in would be a two-way communication between each scan which again massively eased my fears and like the last one I’d have an emergency button I could press at any time to get out. They asked what kind of music or radio I wanted to listen to, we laughed a lot and by the time I was strapped in, ear plugs in (the scans themselves are unbelievably loud and juddery), head tightly in the cage and being slid into the tunnel I was in a good place psychologically and felt far better prepared.

Holy smokes.

What happened next was quite possibly the most traumatic experience of my life so far and still fills me with fear. And after the last few weeks that’s saying something.

It all started ok although when she started speaking I should in hindsight have immediately picked up that I couldn’t really hear her. But to be honest at first I didn’t think it was that bad as I could still make out some words and I thought maybe I had just let my mind wander when she’d said the amount of minutes the proceeding scan was going to take although I was sure she’d said 4. The scan then started, I closed my eyes and concentrated on my breathing to try and stay calm.

After a while I started thinking it felt like it had been quite a bit longer. Telling myself it was just my warped brain I again focused on meditating and any of positive thoughts that came into my head. More time passed until suddenly the scan stopped and she started talking to me again. This time I realised I definitely couldn’t hear her. She again said what I thought was 4 but it could have been 14 or 40. That’s a big difference. So I shouted “I can’t hear you” but almost before I’d stopped speaking the scan had already started. Panicked I realised that most likely, for whatever reason, she hadn’t heard me.

Still trying to remain as calm as I could I went back to closing my eyes and trying to think of positive things – Loli, Danny, events I have planned, my family, my friends, memories, etc. It gets a little hazy for me if this bit was just one scan or several repeated but at some point I think I must have fallen asleep and when I woke up I started freaking out as again it felt like far far longer than 4 minutes that had passed. I decided to open my eyes and look into the office to see if that would give me a better sense of reality. I could see 2 people in there but one of them was obscured by a computer screen. The other one at first glance looked like the male nurse I had got on so well with but after a while I started thinking it didn’t look like him. As I said mu judgments are off so I’m lying there with no idea if it’s been 3 minutes or 20, knowing I can’t communicate with them and whether the person I’m looking at is known to me or not. Suddenly a new man appeared who was clearly a doctor.

With everything else going on inside my brain I went into total melt down as the two thoughts that ran through my head were either 1/ they were looking at the scans and had called another doctor in because there was an emergency or 2/(and I genuinely thought this) I had died and woken up in hell.

I think I then started having a mild panic attack. My heart was going crazy, I felt totally restricted and I had no idea what to do from pressing the emergency button to closing my eyes, to opening my eyes, to what to think about. What was stopping me press the emergency button was the fact I had no idea as I hadn’t been told if that meant they would turn round and say I’d have to do it all over again and there was absolutely no way I could.

After a while the scan stopped and I heard her voice faintly again. This time I started screaming as loudly as I could that I couldn’t hear her and needed help. Similar to the last time I vaguely heard a number 5 or was it 15 or 50 and immediately the scan started again. I just couldn’t believe they hadn’t heard me yet again and I hadn’t heard them. It was quite frankly like my worst nightmare of being buried alive and not being heard.

It took everything and I mean everything in me to not squeeze that emergency button and get the feck out of there and as far as I possibly could but it was from another fear of repeating the whole thing that meant I stayed and went back to closing my eyes and thinking of every picture and associated memory of Danny I’d posted on Instagram earlier. I would then calm down a little followed by freaking out again and have another mild panic attack on repeat continuously for what honestly felt like an hour. I’d try and count in my head seconds and minutes so I’d have some concept of time but it was too hard to keep track.

After what felt like eternity with so many different methods of trying to keep calm applied I eventually decided I couldn’t handle it any longer and I was going to press the button. I made a pact with myself that I’d count to 2 minutes and press it. At some point during that time the scan suddenly stopped and I could see them preparing to come into the room.

The first words the male nurse said to me was “Hi, I’m [X] and you haven’t met me before”. The first words I screamed at him were “Get this fucking thing off me now” repeated 5 times when I saw him shocked and trying to say he couldn’t. At that point everyone else ran in. Trying to calm me I screamed what I’d just experienced and they were utterly mortified. They gently told me they hadn’t heard me at all because ‘the music had been on’. It sounds awful but I do need to say they were so apologetic and horrified. After asking what time it was I realised that I’d also been in there for another 30 minutes more than what they said it was going to take so I hadn’t been going mad, it was indeed much longer which again hadn’t been communicated with me.

Apparently every scan had run on longer than they were expecting and it clearly hadn’t crossed their minds they needed to tell me even if I could have heard better.

With very concerned looks they broached it to me that there was still one further 5 minute scan to go after they’d inserted the cannula. Finally calmer I said that was ok but made them promise to wave their arms around after every minute so I could count how many minutes were left. They also turned the music off and checked if they could hear me. They could. Funnily enough I could also now hear them seeming as they were speaking loudly.

So after triple checking and them all looking very worried I slid in and off started the scanner. This time however with the communication working, the make shift human countdown timer and my knowledge of exactly how long it was going to take I was absolutely fine.

Just one more test

The next appointment in the 3^rddifferent hospital on the same square was meant to be a 2hr neuropsychological test straight after. Following the delays of the last one however and my state of mind I got there and the most wonderful Psychologist Professor decided I should probably come back another day. We still managed to go through a bit and it’s not going to delay anything else as we have time before the results of all the MRIs etc and lets face it, it was absolutely the right decision for her to make. This test is going to be looking at my memory, perception, intelligence and reasoning so not that I’m competitive or vain (!) but I’d quite like to be on my best form.