Ragged Clown

It's just a shadow you're seeing that he's chasing…


The taste of cancer

I promised to provide updates about my health situation but everything is hurry-up-and-wait at the NHS so I have nothing new to report. I thought I’d say a few words about what I am feeling instead.

My only symptom at the moment is phantosmia (phantom smells). This started a couple of years ago when I would just randomly smell something (“Is someone making toast?”) that wasn’t there. It was quite occasional at first — a couple of times a week — and all the smells were nice: marshmallows, butterscotch, popcorn and, my favourite, the smell of rising dough.

Is someone making popcorn?
(CC photo by Dan)

This was right at the start of the COVID and the message at the time was “Don’t go to the doctor unless it is serious!!!” so I didn’t go. Then I got COVID myself and all the smells went away, phantom or otherwise.

A few months later, the phantom smells came back and they weren’t so pleasant the second time around. I had just bought a new jumper from the same company that supplied Sir Ernest Shackleton with jumpers for his expedition to the Antarctic. They are made with raw wool which contains a natural oil that makes the jumpers waterproof. My new jumper smelled disgusting — of dead sheep and lanolin — and Mrs Clown made me put the jumper outside for a few days to air to try to make the smell go away. Anyway, that’s the smell that I began to hallucinate next and it was ALL THE TIME. Finally, I agreed to call the doctor.

Shackleton smells like dead sheep
(Arthur Beale Co)

By the time I got to the doctor, I was back to pleasant smells (Quiche Lorraine, rising dough and sausage sandwiches were the most common) but they were permanently resident in my nostrils. My doctor said “Hmmm. I’ve never heard of hallucinating smells. Let’s send you for a blood test.” By the time I got home, she called me again and said that she had spoken to her colleague and he said I should get an MRI.

MRI booked. MRI done. Results should be ready in two weeks “as we are rather busy at the moment.”

On the way home from the MRI, we went to the Grain Barge with Keith and Nina and my doctor called as we sat down with our beer.

“Are you somewhere you can talk?” (uh. oh.)

“I’m at the pub. The music is a bit loud but I don’t mind if you don’t.”

“Are you with someone?”

“I’m with my wife.”

“I have bad news, I’m afraid. You have a brain tumour. A glioma. I don’t know any more than that at the moment. Someone will call you soon to make an appointment with the neurosurgeon.”

I have this habit of walking up and down when I’m on the phone so my companions didn’t hear any of this. When I got back to my table, I immediately faced a decision. I decided that I did not fancy sitting at the table for a couple of hours with a dark secret so I just blurted.

“Who was that?”

“It was the doctor. I have a brain tumour.”

I would never have planned to do my big reveal in front of friends but it actually worked out for the best (Thanks, Keith and Nina!). We shared a few tears and a few laughs and then we took a selfie to commemorate the occasion as you might expect.

I have some news!

The next conversation, when I got home, was harder. I texted ahead of time.

“Hello, Little Clowns! I’m afraid I have some bad news. I’ll be home in a few minutes and you need to come down and give me a hug.”

More tears and more laughter (and even a bit of dancing) and we started to make some plans. Will we need to sell the house? (we live in a house with 5 floors). When will I need to quit my job?

Tears and laughter…
…and dancing.
Big hugs for a little clown

Anyway, it’s a month later now and we still don’t really know more than we knew at the start but the smell has infected my taste too and it’s really starting to get on my tits. Let me try an analogy to see if I can convey what it’s like.

Imagine you try some fancy chocolate. It’s very nice but it’s 96% pure cacao so it’s quite bitter. It’s the kind of thing you might like to try occasionally but it would get pretty tiring if the only thing you could eat for the rest of your life was 96% cacao. That’s about where I am now. My smell/taste doesn’t actually smell/taste like chocolate — it’s more like a sausage sandwich — but it dominates everything that I taste and smell.

Now, I love sausage sandwiches but not all the time — I’d like to experience other tastes too now and again. Because it’s ALL THE TIME, I’ve come to think of it as the taste of cancer. I can still faintly smell other smells and taste other tastes but it’s all mixed in with the cancer so my sea bass will taste like fish+cancer and my coffee tastes like coffee+cancer. I don’t even remember what things are supposed to taste like anymore. Last night, I was craving something strong-tasting that might overwhelm the taste of cancer so I had some dry-roasted peanuts. They tasted like a big handful of cancer. Beer still tastes like beer and tea still tastes like tea but I imagine that that’s just a temporary consolation.

So that’s where I am at the moment. Nasty smells are nasty and the prospect of an early death is not exactly joyful but I am in good spirits and fitter than I have been in many a year with (almost) daily visits to the gym. I have my funeral, my last will and testament and my power of attorney organized and I have a new camping chair so I can sit down by the harbour with my little dog.

“It isn’t events themselves that disturb people, but only their judgements about them.” — Epictetus

Hurry-up-and-wait is getting me down a bit and two weeks for the results of my latest MRI seems inhumane but I have been reading my Epictetus and my Seneca and they are helping me deal with the waiting. You know, people have the Stoics all wrong. People think that stoicism is all about being miserable all the time but it’s actually about being prepared for what might happen so you can handle it when it comes. I am handling it and I am living and loving life to the full.

“What need is there to weep over parts of life? The whole of it calls for tears.”
— Seneca