Story so far: I started smelling random smells about three years ago (Are you making toast? Are we having butterscotch for dinner?). About five years ago, I thought maybe I had diabetes because I could smell popcorn when I went for a pee. In hindsight, I think that was probably a phantom smell.
The smells were occasional at first and they were all quite pleasant. When the pandemic came along they said “Don’t go to the doctor unless it’s serious!” and delicious smells didn’t seem serious to me so I didn’t go to the doctor.
Anyway, fast forward a year and my smells were more persistent. After I bought my fancy raw wool jumper, I smelled dead sheep ALL THE TIME which meant it was time to see a doctor. She sent me for an MRI which said I had a brain tumour.
The doc said my phantoms smells were caused by seizures which is a form of brain tumour-related epilepsy and they put me on an anti-seizure medication which did nothing except give me horrible side effects. They increased the dose which made the side effects worse but did nothing for my phantom smells which were getting worse by the day.
I looked it up on the internet and the internet said that seizures are usually transient and last just a few minutes. Mine lasted all day. Hmmm. Maybe they are not seizures. Maybe it’s something else.
I asked the Lovely Nurse about it and she referred me to an epilepsy nurse. I told her my theory about how maybe they are not seizures and she said “You know nothing, Jon Snow. Of course they are seizures. The doc says they are seizures so they must be seizures. You just don’t understand. And stop reading things on the internet.”
After all this arguing with my doc, I’m starting to suspect that my phantom smells are not even phantom smells at all. I think my olfactory system is classifying real smells incorrectly (parosmia) rather than inventing phantom smells from nothing (phantosmia).
What usually happens is, I’ll have a dominant smell that lasts for several days and everything I smell will smell like that thing. The smell is usually something nice (salmon, tarragon, sausage sandwich, rising dough, liquorice tea, dog treats (yum)) but, occasionally it will be something unpleasant (like dead sheep). I smell coffee and it will smell like dog treats. I smell salmon and it will smell like dog treats. But then the bogus smell will switch to salmon and everything will smell like salmon for a few days.
Earlier this year, I bought a fancy sweater that was made from raw wool. When it arrived it smelled of dead sheep and lanolin and Mrs Clown would not let me keep it in the house. For weeks after that, everything smelled of dead sheep. That was the final trigger for me to go see a doctor; I could handle smelling popcorn at random but dead sheep was a smell too far.
The smells are getting more intense and I can’t trust my sense of smell to tell me the truth anymore. It has started to affect my taste now too. One by one, I’m losing my enjoyment of the foods that I eat. Mrs Clown often makes me an English muffin with ham, cheese and egg but today it just tasted like a dog-treat sandwich. Dog treats are nice but I prefer ham and cheese and egg. I put lots of ketchup on my muffin to hide the dog treat taste which made it edible. Fortunately, ketchup still tastes like ketchup.
Some tastes are still fine. Tea still tastes like tea. Wine tastes like wine. Beer still tastes like beer most of the time but, if I try a new beer, about half the time it will taste of dog treats. Sometimes it will taste like delicious beer with a hint of dog treats.
One of my favourite beers is Fuller’s Vintage Ale. The bottles have a ‘best after‘ date and the beer gets better with age. A fresh bottle costs about six quid but matured bottles are closer to a hundred quid. I had two bottles of 2020 ale that I was saving for better days but I suddenly realised that I need to drink it soon before it turns into dog treat juice. So, today, I sat in the sunshine with my special chair and my little dog and I opened my bottle of 2020 vintage ale. It tasted like delicious vintage ale with just a hint of dog treats. I think I drank it just in time.
I mentioned before that I am going for a biopsy this week. There’s a chance that if the biopsy says I have a particular mutation, I will be able to have chemo but, to be honest, I’m not even sure I want to do that. I just gots to know. I’m not particularly worried about the actual biopsy surgery — they will drill a one-inch hole in my skull and pull out a bit of brain with a needle — but I am getting nervous about what the biopsy will tell me. Fortunately, it will only take several weeks to get the results (Thanks, Tories! Whatever happened to that 350 million quid per week?).
Fingers crossed, eh?
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