After giving me a CT scan they wheeled me back out into the corridor, and a porter came to collect me and push my bed back to its bay in the emergency room. I felt a little bit silly. Years of tests and scans that lead to nothing had desensitized me to hospitals, and this didn’t feel any different. I was watching the clock, working out that if I got out in the next thirty minutes I could still make it home on the last train. Then a doctor appeared and drew the privacy curtain around my bed.
‘Oh, it’s been a long day for you,’ he said as he looked over my chart.
‘Yea I suppose. I’ve been here for about eight hours.’
I waited for him to say the line: there’s nothing on the scan so you’re free to go. But he didn’t say it. Instead he changed the script and said, ‘So we did find something. You have tumor. It’s a pituitary adenoma. And yours is quite big so it’s what we call a macro-adenoma.’
He told me more about the type of tumor; how rare they are, biochemicals they can secrete, the different ways in which they can cause problems throughout your body, and how they’d need to do more tests and scans to determine the next course of action. It was kind of hilarious. I thought, of course it’s a brain tumor. This makes so much sense. I’ve been sick for so long, in so many different ways, and we’ve never found the cause. Now there’s this thing which could explain everything.
My phone was on 5% battery. I shot off a text message to my wife while I was being wheeled through the hospital again:
I’m being admitted to the neurology ward. I might need to wait until I’m up there so I can call you. I am okay but it’s going to sound scary when I tell you what’s going on. Xxx
…
Two weeks earlier I was sitting down in the big chair at the opticians, being asked the typical health questions they ask you before an eye test. The optometrist asked me, ‘Do you take any medication?’ I told her I do, then I pulled out the list of my daily medications, and we worked through it together as I explained what they were all for. My collection of diagnoses grows every year. Chronic migraines, osteoporosis, Postural Orthostatic Tachycardia Syndrome (POTS), iron deficiency anemia, Myalgic Encephalomielitis/Chronic Fatigue Syndrome (ME/CFS), plus a couple which I’ll keep secret just so I can retain some of my enticing mysteriousness. The optom was grateful that I brought my list. She asked me if I experienced any visual disturbances, or headaches. Yes and yes, but that’s normal for me.
The eyesight test was uneventful if anything. My prescription hadn’t gotten much worse since last time; just a little change with my astigmatism. But while reviewing my retinal imaging, she saw something that made her pause.
‘Now, this could be nothing. But your optic nerves appear a little swollen. Without images from previous years I can’t tell if this is a new development. You could have had this since you were a child.’
I glanced at her screen and thought the veins around the optic nerve did seem kind of tortured and zig-zaggy, but I couldn’t remember what they’d looked like the last time either. We deliberated for a moment before she decided to forward the images to an eye doctor colleague, for a second opinion. I thanked her, and bought some new glasses. She said she’d be in touch if there were any updates.
The next day I was working from home because my heart rate was spiking every time I stood up, and I was getting awful pressure headaches that made me grimace in pain.
I received a phone call from the optician. She said, ‘The ophthalmologist has reviewed your images, and we’re going to refer you to the eye hospital so you can properly get checked out.’ Fine, I thought. Another appointment with another specialist for something that may or may not be wrong with my stupid body.
The appointment came through quickly, it was less than a fortnight away. When the day arrived I worked from the office in the morning, and stepped out around lunchtime, expecting to be back in the afternoon. I saw the eye doctor. He looked at my eyes through a slit lamp. Then he made me wait in the corridor before bringing me back to have another look with the lamp. Then he sent me away again. When he brought me back he gave me eye drops to dilate my pupils. He looked at my eyes with his lamp again, then brought in a colleague to have a look too. Then he sent me back out once more to wait in the corridor.
I waited. By this point my vision was so blurry, it made no difference with or without my glasses.
The doctor came out to the corridor and explained that he wanted to check my peripheral vision, but due to the drops he’d put in my eyes, I wouldn’t be able to see anything anyway. No shit. So he asked me to come back the following day. I walked blindly to the train station, and somehow made it home. I closed my eyes for a bit when I got in, and when my eyesight returned to normal I managed to get some work done remotely.
The next day, I started in the office again, and around lunchtime I went to the eye hospital for a visual fields examination. The technician made me retake the exam twice because I kept missing some of the dots you’re supposed to see. After that, the doctor saw me again and looked at my eyes with his slit lamp. It wasn’t enough though. He had to use the dilation drops again. More waiting, followed by more lights being shone in my eyes. I met the doctor’s colleague from the previous day again. Then a third person came into the room for a peak. Then they talked among themselves while I waited in the corridor. Eventually the doctor leveled with me.
‘You might have something called papilledema. It means swelling of the optic disc, usually caused by increased pressure in the skull. It might be alright, but I don’t want to risk leaving it and it getting worse, so I’m sending you to the emergency room.’
He made me wait in the corridor one last time while he wrote an emergency referral letter. He came out and handed it to me, and told me to go straight to another hospital up the road. So I did. I didn’t spend long in the waiting room. They took me to a separate area where I was triaged by a nurse. Someone took my blood. A doctor performed a short neurological examination on me. I was taken to a bay and asked to sit on a bed. Another doctor came and took more blood, this time leaving a cannula in my arm for easy access. I waited. I saw another doctor. Then after a few hours I was taken for a CT scan so they could check out my brain.
I ended up spending all of Friday, and most of Saturday on the neurology ward. I sent my boss a message on the Friday morning, explaining I wouldn’t be coming to work because I have a brain tumor. While staying in the hospital I had an MRI scan, and loads more blood tests. They let me out after two days when they’d decided I was stable enough to go home. That was just over three months ago. I’ve seen so many specialists since then. Now I’m awaiting a date for neurosurgery. The plan is to remove as much of the tumor as possible through my nose with a surgery called transsphenoidal resection. However, some of it is too dangerous to approach with this method, as it is inconsiderately wrapped around the carotid artery. And that one’s quite important. We’ll evaluate the situation after the first operation, but there’s a chance I will need radiation to get the rest of it, and I don’t know how to feel about that yet.
Next week I have to have a lumbar puncture/spinal tap so they can extract some cerebrospinal fluid. They’re going to insert a large needle directly into my spine. My spine which is compressed and fractured due to my inexplicably low bone density. There’s a concern about inter-cranial pressure, and the doctors want to rule out any other conditions that may be collaborating with Tabitha (I named my brain tumor Tabitha) to add to my expansive list of symptoms.
When I’m not in hospital, I’ve just been going to work like everything is normal. A few friends have told me that’s crazy behavior, but I’m not really sure what else to do. I’m going to need some time off to recover from surgery, so I don’t want to just rot at home while waiting for that. It’s a bit of a struggle getting ready and going to work each day. Quite often I’m in a lot of pain. If I worked a physically demanding job, or something that didn’t allow for breaks when needed, or work from home days when it gets too much, I’d definitely not cope. But thankfully, I make video games. So as long as I can write stories about aliens and spaceships, and assemble some basic code, it’s all fine. Everything is going to be fine. Probably.
