This particular post has been percolating in my brain for almost a week now. I suppose I am writing it in an effort to move it from my brain and into the world so I don’t have to think about it as much. This post is entitled the sequel, but I’m actually going to start at the beginning. Strap in if you’re going to read on, it could be a long one.
A few years ago I began having terrible headaches. What I originally thought were migraines, began to last for days, never abating in their intensity. Eventually they just stopped giving me intermission at all and I had 24/7 migraine. I’d lose vision and have bouts of nausea from the pain. It was horrific. Then I began noticing other symptoms. numbness in my face, or worse, tiny stabbing pains like pins and needles or a constant, bone-deep ache.
My favourite of all of these new and exciting symptoms, auditory hallucinations which I had to look up and are apparently called… wait for it… exploding head syndrome. Oh yeah, you read that right. Brilliant name, terrifying thing. It didn’t make me think my head had exploded, it just sounded like something else had. Just as I would be falling asleep I would hear it, a massive explosion. Not like a TV explosion, a frightening, there is a gas leak and my house has exploded kind of explosion. I would be flooded with adrenalin, heart pounding, flailing out of bed to find G snoring peacefully beside me. It’s sort of difficult to fall asleep after that.
I went to the doctor. Now, I had been to the doc on and off about this and they kept giving me medications for migraine and I tried them all, only to find that none of them were really touching the pain. I decided to be firm and I asked for a scan. I knew something was wrong. The doctor pooh-poohed me but did as I asked and sent off for a scan appointment.
The scan came and went and I got an appointment for the results. I went alone because I wasn’t really afraid of the results, I just wanted to get answers. When I walked into the room I was not expecting her to say that they had found an 8cm tumour inside my head. I didn’t really know what to say, what to ask. She explained that a tumour doesn’t mean cancer, just a growth that shouldn’t be there. She was sending for a referral and I would need to go and see someone at the hospital to review my options. Then I left to walk home.
I was doing OK until I got outside, put my headphones in, and pressed shuffle on my music. Who wants to live forever by Queen was the first song. I can always appreciate a nice bit or irony. Standing in little cement courtyard adjoining the main street, I both cried and laughed at the same time. I was frightened and unsure and the universe was now throwing shade at me like a drama-bitch-from-hell. What am I supposed to do with that?
G was at work and my sister was waiting to drive into work with me for the day. I had to tell them both. For the record, telling your husband this news over the phone while he is at work… it sucks for both of you. Not crying when you tell your sister so that she can cry and you are the strong one, it sucks too. Worse when you have to tell your parents.
After that suckfest, I went to work, where I told my boss, and cried. Embarrassing? Hell yes, but he doesn’t need me to be strong for him and lets face it, I needed his support.
What I didn’t know then, is that what would follow would be the worst two years of my life. In summary, I had multiple scans and the consultant I went to didn’t seem to be able to make head nor tail of me. I felt ignored and belittled when I saw him. Not as though I was wasting his time, but more that I didn’t know what my symptoms were because he couldn’t explain them. I felt stupid, exhausted and in pain.
It was an effort for me to function every day without crying, dying or doing something else melodramatic. I slept poorly, if at all, and I was in pain all day, everyday. It syphoned every inch of joy from me and left me a shell of myself. There were whole days when I could barely get the energy to speak to people. I definitely didn’t have what it took to engage in proper conversation.
Everyone always says you find out who your friends are at times like this. My god I am a lucky girl. There were people who I held dearly, who couldn’t even lift the phone or send a message to ask how I was, there always are those people, but there were so many who gave such warmth and love and support that I am actually overwhelmed when I think of it. I feel deeply loved.
Eventually, after all of the medical issues, the discovery of a second tumour (which I found out about by accident, and my initial consultant denies even existed), and a referral to a new consultant, I found a way forward and I had surgery in January 2017.
The first few weeks were tough going. They performed the surgery though my nose (hooray for brilliant doctors and the marvels of medical science). I cannot describe to you the feeling I experienced when I sneezed for the first time during my recovery. Let’s just say that I never want to do it again!
After a few weeks though, I woke up without a headache. The world was my oyster. This is the first time in two years that I had been without pain. I wanted to do everything. Mostly, I wanted to go out and greet the world. An hour later I was about a mile from my house and I realised what a terrible mistake that was. Baby steps Alexis! I made it home in one piece and took it day by day instead. I also received a raised eyebrow from G, for pushing my luck.
The day I realised I had recovered, I was making dinner, and I realised I was singing. Then, I realised I couldn’t remember the last time I had sung anything. It made me incredibly sad to think that and I decided I was going to YOLO the hell out of this life. I can honestly say that I made 2017 my year. I learnt to drive, I embraced writing again, I took the trip of a lifetime to Norway to see the Aurora Borealis and I published my first book. I crammed everything into that year and I have not a single regret.
The only problem, in November I began having headaches. A niggling doubt surfaced that the tumour was back. A check-up with my consultant resulted in a hasty scan and a hasty second consultation. I knew the answer, but I stayed hopeful.
I was wrong to be hopeful.
My tumour is not only back, it is making headway into new and interesting spaces it had not occupied before.
I kept it together during the meeting but the moment we stepped outside, I started to cry. Not because the tumour is back, we’re still pretty certain it is as benign as last time (massive thank you universe, your gift has not gone unnoticed), but because I’m not sure I can do it all again. I don’t want to have to fight for treatment and to get up every day. I don’t want to feel this joy and energy that I have won back, being sucked away. I don’t want to watch G struggle to cope with the knowledge that I am in pain and there is nothing he can do to fix it. I don’t want to be the cause of that look of worry on the faces of my parents, sister and friends. I just don’t want it.
Then, G held my hand and he told me that if it had to happen, he was glad that it happened to us. He doesn’t want this for me, but we have no children, incredible support in one another and our near and dear and my boss and work were incredible and supportive over the last two years. He told me I was strong and that we could do this again.
I don’t want it, but it has chosen me.
I’m going to kick its arse.