Ragged Clown

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


Aug
1
2022

Vintage Tastes

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.

Sir Ernest Shackleton smells like dead sheep.

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.

Gets better with age.

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?

PS. I think I am about done with Facebook and Instagram and Twitter. If you want to follow along with my adventure, subscribe for updates to my blog. If you are on a big screen, you’ll find an option to subscribe on the right of the screen. If you are on a small screen, scroll down to the bottom of the page.

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9 responses to Vintage Tastes

Janet August 1, 2022

Yes, Kevin, fingers are crossed all over the world on your behalf. I wish you could transfer any anxiety you feel to all of us, spread it around a little, but it doesn’t seem to work that way, so will wish you all calm confidence as you navigate the next several weeks. J

    Ragged Clown August 1, 2022

    I’m pretty calm actually, Janet. But thank you!

    Mrs Clown maybe not so calm.

      Janet August 1, 2022

      I was using The Royal You/Your lol I’d gladly take some of Mrs. Clown’s nervousness off her shoulders if I could. Glad your Zen is holding firm so far ??

Dianne Pagani August 1, 2022

Think of you always Kevin but you especially be in my thoughts and prayers on Thursday

Norma Jean August 2, 2022

So sorry about the rising predominance of dog treats in your heirarchy of taste discrimination. I can sympathize based on, ~3.5 yr. ago, having been hospitalized w/ a respiratory infection that the swab drilling its way up toward the cribiform plate separating my nasal passages from my brain (and feeling as though it would breach that barrier) led to a Dx of some virus I’d never heard of(para something 2). They I could taste and smell all the yummy offerings on my food trays (although reaching those items was challenging as they’d brilliantly installed catheters in the vein right in the middle of the antecubital fossa on ea. side, read “inside of elbow”, telling me not to bend my arms, then placing a tray just above my chest, leaving me to try to push open the carton of skim milk, unwrap and insert a straw, cut up and feed myself my salad, plus lots of deliveries of one single pill in a little cup I was to raise to my mouth in one hand, followed by raising the cup of water they also proffered to me with the other hand, to wash down the pill; I try not to attribute all this to evil motives, since attributing them to insanity raises my BP less).
Then they gave me an aeorosol Rx product with Combi- in its name, had me use it once, then discharged me home with it.
The next day I couldn’t smell or taste anything. Just figured that I’d had an uppper respiratory tract infection and after a cold when you’ve been stuffy nosed and dribbly, those senses are infected. But looking back, I’d gone through the worst of the infection being able to smell & taste normally and only after one snort of the aeorosol product I had neither. Surprising.

But surprise evolved into concern and then enormous concern as time passed. I could, with accuracy, distinguish btw. solid & liquid, hot & cold, crunchy or not. Period.

I lied. I could detect salt a bit, so I craved salt to where I thought of looking up a livestock supply firm and ordering a salt block just so I could get some kind of feedback occasionally by licking it.

Two years went back that way. Couldn’t tell a raspberry from a Brussells sprout except by texture. I felt SO DEPRIVED!

I cruised through cupboards & the fridge looking for something that I could put in my mouth that didn’t give me a read-out of “nothing”. Medium salsa at least gave me the mouth feel of heat, and I had to settle for that as as good as it gets.

It was such a misery, ordering or preparing or purchasing something I knew I loved an getting a consistent read-out of “nothing”.

Except occasionally there would be “undefinable really bad taste” that would remain in my mouth all day, through all meals and snacks.

I went to an ENT who said I could try smell retraining although the odds of success are low, spending 20 sec. several times daily sniffing cloves, citrus, coffee grounds, and some perfume or cologne. I cont’d that for years. Get something recognizable from cloves and, in the 3rd yr., from orange peel.

In the past 6 mo. I have been able to taste some things some days, usually early in the AM, which is a blessing since I am a passionate lover of good, rich, dark roast black coffee, so being able to taste it just a little is so wonderful!

But once my taste buds have reported something, they tend to be through for the day and after detecting one or two things, slightly, go on strike the rest of the day. I bravely smile across the table at the few times I’ve shared an outdoor restaurant meal w/ a friend once fully vaxxed, admiring what I ordered, but having to settle for enjoying its appearance.

No sense of smell has ever returned except for cloves detection.

The impact on QOL is so enormous that I doubt anyone who hasn’t experienced it can conceive of a world w/o aromas or flavors. So, as Bill Clinton said, “ah feel yo pain!” I truly do.

The biopsy doesn’t sound like fun at all, but perhaps while they’re in there you could request they locate the switch and turn taste and smell back on or, at least, switch off “dead sheep” & “dog treats”.

I’ll raise a glass to useful info. coming from this, although I’ll have to look at the vessel from which I pour to see what it is, since my taste buds and olfactory epithelium will give me no clues.

TO YOUR HEALTH!

BTW, I still never get notifications of any of your new posts. Had to go find an old post w/ a link and go look to see if there were any.

NJ in CA

    Ragged Clown August 2, 2022

    Sounds like you may have it much worse than me, NJ. Coffee is a weird one for me. I do enjoy my coffee in the morning but it definitely does not taste right. It’s almost like I am enjoying the memory of the taste.

Grizz August 10, 2022

See operation went well , speedy and mindful recovery Kev.
ATB Grizz

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