I haven’t told my story in a while. I thought I’d share the short version along with an update. I’ll start with some symptoms from the old days.

Back in the last century, I was at home in San Jose. I was enjoying a little romance and when I lifted my head to gaze into my true love’s eyes, I felt a shock of lightning and the world started spinning. I felt very ill but I didn’t tell anyone and got back to my romance.

A few years later, I was fixing the garbage disposal. I was lying under the sink and when I lifted my head to see the pipe, I felt that same shock of lightning. Like an axe handle to the side of my head. The room span. It felt like I’d had one bottle of vodka too many. Like when you get off the spinning Waltzer fairground ride you should never have ridden in the first place.

I discovered that I could stop and start the spinning just by moving my head a few inches to the left and I managed to finish fixing the garbage disposal.

This time though, I went to see Dr Griffith.

“Oh, it’s just vertigo. If you like, I can put you in this chair and spin you around until you puke. You’ll feel much better.”
“Er. No thanks, Doc.”
“Oh, OK. Probably nothing anyway. Let me know if you ever want me to spin you around in that chair!”

Twenty years later, I still get this vertigo when I try to fix a curtain rail or hang a picture but when it happens, I know how to stop it now. Is it a symptom? Who knows?

Another year went by and I started getting this itchy feeling in my legs. I say itchy but… Imagine a swarm of African Fire Ants crawling up and down your legs all night. The only way to stop the itch is to march frantically up and down the bedroom while rubbing your legs. If I stop the marching, the ants come back.

I went to see Dr Griffith again.

“It’s probably an allergy. Try some camomile lotion.”
“Could it be Restless Leg Syndrome?”, I asked.
“It could be malingering. I’d stay off The Google if I were you.”

The itching stopped after a week or so anyway.

The next incident was about halfway along our 150-mile drive to Fresno to collect our lovely new puppy. My Little Clown and I stopped on the way to get a sandwich and as we walked to our table, I said “Ooh. I feel a bit dizzy. I need to sit down.” Jazz told me that I passed out and then went into a kind of spasm with my head in my sandwich for about 30 seconds while she cried. The staff and customers in the crowded Subway restaurant walked past my 13-year-old daughter and watched her cry while her dad had a grand mal seizure on the table.

We were nearly in Fresno though so we continued to Rusty the cockapoo breeder’s house to collect the Best Puppy in the World and drove home without incident. When we got home, I went to see Dr Griffith again.

Dr Griffith said, “Oh. Grand Mal seizure. That could be serious.” He shone a bright light in my eyes and asked me a few questions. “It’s probably nothing. Let me know if it happens again”, he said.

Fast forward a few years to a life in another country and I started to smell phantom smells.

“Is anyone making toast?”
“No, dear.”
“Do we have new flowers?”
“No new flowers.”
“Are you making my favourite soup?”
“I’m not.”

We thought about going to see the doctor but about that time, the government said we had to stay indoors because of COVID and we definitely shouldn’t go to the doctor’s unless it was super-urgent. Eventually, I got COVID and all my smells went away, phantom or otherwise. I forgot all about it for a year or so.

I’ve been a Sir Ernest Shackleton fan since I visited his grave in Grytviken, South Georgia in 1984 and I have long been an admirer of his jumpers (AKA sweaters) so I got myself one. It smelled of lanolin and dead sheep.

If you are an old-time explorer on a voyage to the South Pole, it’s probably fine if your jumper smells of lanolin and dead sheep but my wife didn’t like it and she made me leave my jumper outside. A few days later though, the smell came back.

“Did you bring my jumper in?”
“No, it’s still outside.”
“I think I should call the doctor.”

Smelling flowers and delicious soup is one thing but smelling dead sheep all day long is much less pleasant and I suspected something might be up. Fortunately, we’d left Dr Griffith behind in California but the waiting list for my new doctor was about three weeks long. I called to make an appointment and she said “Oh. That sounds serious. I can see you tomorrow morning.”

Morning comes and I go to see my new doctor.

“Phantom smells etc…”, I say.
“Hmm. Never heard of that”, the doc says.
“The Internet says it’s either diabetes or a brain tumour”
“Well, let’s do a blood test for diabetes then and hope it’s not the other thing.”
“Let’s hope!”, I agreed.

I was on my way home when she called me to say “I asked my colleague and he said you should have an MRI. I’ve booked you in for Monday.”

Monday comes. The dude operating the MRI was brilliant (they always are). Lots of jokes and he explained how it all worked. “Are you allowed to look at the results?” I asked. “I am allowed”, he laughed. “But I’m not allowed to tell you!”

As I was walking home, the radiology department called me. “Can you come back tomorrow? They need to do another scan with contrast.”

“Uh! Oh!” I said.

After tomorrow’s scan, we met our neighbours at the Grain Barge for a beer on the way home and my doc called me while I was there.

“Are you somewhere you can talk, Mr Clown?”
“I’m at the pub. I don’t mind if you don’t mind.”
“Are you with someone?”
(uh! oh!) “I’m with my wife.”
“I’m sorry, Mr Clown, but you have a brain tumour. I don’t know any more than that but someone will call you soon to make an appointment with the neurosurgeon. kthxbai.”

Mrs Clown made that noise that Iranian women make when a national hero dies.

Do you have any idea how slowly two weeks pass when you are waiting for more surprises about your brain tumour? Anyway. The neurosurgeon says…

“It’s a glioma. Three lobes. Size of two golf balls. I can remove it if you like. You’ll have the surgery while you are awake so I can prod your brain to see which bits are safe to chop out.”
“Will you remove all of the tumour?”
“No, just a little bit.”
“No thanks then.”

The Internet says that if your tumour is in three or more lobes, it’s called a gliomatosis celebri which is a 1 in 10,000,000 diagnosis. It’s just me and Kristina as far as I know.

Fast-forwarding through the next couple of years:
I refused all treatment. My three lobes grew to six lobes, two hemispheres and a corpus callosum. My sense of taste broke too but then it got better.

Here I am two years later and I had my first official seizure at Christmas. Then another. Then another three on subsequent days. I was awake for all of these seizures. Each time, I drifted in and out of consciousness while my Little Clown tried to talk to me.

Mrs Clown gave me one of those quizzes you give to people with dodgy brains. I got zero points for prime ministers and the name of our street but I got the month of my birthday right and remembered some of my family’s names. I got my favourite singer-songwriter right though!

We do a similar quiz after every seizure — though sometimes I have no language at all. It takes a while for my speech and memory to come back. I can understand everything that is going on around me — I just can’t talk about it.

A quick aside for the philosophers among you. Philosophers argue over whether language is required for thinking. When I come out of a seizure, I can think very clearly even though I have no language. I understand everything that is going on but when I try to talk about it, it all comes out garbled. I even tried writing it down last time but although my handwriting was lovely, I didn’t manage to write any actual words — just a long stream of random letters. Inside my head, it feels like I am thinking in words but when I try to share them with other folks, they just come out as nonsense.

My next seizure was a bit more dramatic. I didn’t know anything about it until I woke up and everyone was sitting on my bed at two o’clock in the morning.

Me: “Why is everyone sitting on my bed? Is it because you love me very much?”
Little Clown: “No, it’s because you had a seizure. You were out for 25 minutes. We thought you were dead. The ambulance will be here in a minute.”

The ambulance folk were very nice and they did all their tests but we decided we’d rather go back to sleep than go to the hospital. We walked down to the hospital the next morning and they gave me a CT scan and blood tests then kept me overnight for observation.

We had an appointment with the Lovely Oncologist soon after that and I surprised her (and Mrs Clown) by asking to have chemo. I started it a few months ago. It’s just a pill and probably a bit milder than the chemo you are familiar with.

After the first round of chemo, I had another seizure. This time, the ambulance folk were already there when I woke up and they were even nicer than the previous lot. After some tests, I gave them a tour of the house and then I had my first-ever ambulance ride. I didn’t stay the night this time but they did their tests and we came home. Back to the chemo.

Anyway. So that’s where we are now. My tumour symptoms are creeping up a bit and my memory is starting to wane. I read somewhere that you can plot the vocabulary that Agatha Christie used in each of her books to follow her decline. That’s about where I am. I have another year to go with my philosophy degree so let’s hope it doesn’t need too much memory or vocabulary.

Round three of the chemo was a bit more unpleasant than the previous rounds but it is all tolerable as long as I remember my bran flakes. I just had an MRI to see if the chemo is doing any good but I have it on good authority that the NHS only has one radiologist for the whole country so I will have to wait a month to get the results. Let’s hope they are happy results!