Ragged Clown

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


Apr
27
2022

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
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35 responses to The taste of cancer

Rosa May April 27, 2022

This made me cry, then it made me smile then cry again, then smile again. As I was thinking and wondering about the beer tasting of sausages you answered- so glad it still tastes like beer! And Tea! But I get you…just wish I could be of some use, somehow!
Brings back memories of 30 years ago, except everything moved so fast then, but somehow I remember most of it vividly as if in slow motion.
Love to you, Mrs Clown, Master Clown and Miss Clown xx

    Ragged Clown April 28, 2022

    I am grateful that my cancer and I are moving slowly for now. It is a comfort having time to plan.

Janet April 27, 2022

Right on, Stoic. Lifey stuff is the stuff of life. Everything is temporary. The biology of living requires constant evolution and death and replacement on scales both micro and macro.

But as one friend raged several years ago (after the umpteenth person responded to her tale of serious illness, death, turmoil with “oh, well, the circle of life, you know”):

“I HATE THE CIRCLE OF LIFE.”

I do, too. I am sorry that you are plagued by this smell and taste thing and that you received that tumour news and had to share it with everyone you know and even some (like me) who you *don’t* know. Especially your beautiful family; thank you for that lovely group photo.

Thanks for sharing with us. Hang in there. Know there’s a lot of goodwill out here beaming in your direction. XO to all of you.

Claire ATX April 27, 2022

Thank you for the detailed update. “The taste of cancer” demonstrates a remarkable sense of humor and puts the cancer in its place.

Thanks for sharing your family and friends.

Lots of good thoughts coming to you from around the world, thanks to your dedication to Smart Patients.

Please keep us posted.

Claire ATX

Kevin April 27, 2022

Thank you for the update. Hope to pop over for an ale and chat soon. Love to The Clowns.

Julio April 28, 2022

Thank you for keeping us updated, Kev.

Andreas April 28, 2022

I wonder if capsaicin would cut through at all? Being that it triggers the sensation of pain rather than being truly a flavor, as bland but hot food will demonstrate. Perhaps foods a little spicier than you previously cared for would be a change of pace! Confusing and fascinating that beer and tea are holdouts. Perhaps something about how they’re processed is different, in terms of physical memory storage? Some difference that overrules or bypasses the mistaken signals about that sausage sandwich?

    Ragged Clown April 28, 2022

    Thanks, Andreas, you are the second person to suggest spicy food. I’ll give it a try tonight. Though I have to say, there is no such thing as “a little spicier than I am used to” 😉

    My hypothesis was that any food that has a hint of umami gets converted to sausage sandwich in my brain. Not sure if the coffee example supports that hypothesis though.

Fabienne April 28, 2022

Kevin I salute you for being the person you are right now. This piece of writing is pure gold and I hope the shiny aura will stay over you all forever and ever.

Anton April 28, 2022

I am thinking about you and your family a lot. I’m glad that Stoicism is helping.

    Ragged Clown April 28, 2022

    Marcus Aurelius has been sitting unread at my bedside for about 8 years. He is next!

Graham April 28, 2022

Kevin – Great to see your family pictures – who would know they have just received your news or maybe they are celebrating! When you get to my age you will find that all senses will change as nerve pathways are lost. Recently I started adding a teaspoonful of Naturya turmeric super blend organic powder to my daily tuna fish and it makes all the difference. I now eat mature cheese instead of mild. We are trained from birth to dislike “poo smell” but it’s manna to the house fly.

    Ragged Clown April 28, 2022

    Thank you, Graham! I prefer to think that we are celebrating our family.

    On my list of things to try:

    – Hot sauce (Andreas and Richard)
    – Lemon drops (Robin)
    – Suck on a lemon (Georgina)
    – Something that smells like poo (Graham)

    I put yours at the end of the list and will try it if none of the others work 🙂

      Graham April 28, 2022

      My family left behind some turmeric and I have become so addicted to it that I ordered some more on Amazon.
      I do believe that treating something trivial with something worse will cure the trivial

    John April 28, 2022

    “The smell of rising dough.” It’s not often I laugh and cry in the same writing. You have a gift.

Red April 28, 2022

Kevin, you are an inspiration… It’s one thing to read about stoicism and understand it, but it’s entirely another to put it into practice successfully during times like you’re going through.

    Ragged Clown April 29, 2022

    S’funny, Red. I’ve never thought of myself as an official Stoic before — I always liked Epicurus better — but it sure does help to think about which things you can control to accept the things that you can’t.

    I think of you every time I have a Japanese beer (which is often)!

Jody Gomber April 28, 2022

Kevin – you have helped so many on Smart Patients, and continue to help so many both there and on this blog. I am learning so much by reading your thoughts as you come to grips with this frightening diagnosis. I hope you continue to have many days of love, laughter and dancing.

    jack hall May 4, 2022

    Thanks for introducing me to Kevin.

Jen Glaeser April 28, 2022

Kevin. Thank you for the update on your state. Know that so many are holding you in our hearts and meditations. May you be happy may you be healthy may you be at peace. Love to you and yours

Beverley April 28, 2022

We do not know each except through Smart Patients.
Taking care of business and planning will certainly give one peace of mind and is a wonderful gesture for your family. It shows that you care for them and are looking after them…easing the load.
I hope I can be so upbeat as my body disintegrates. Peace be with you. b

Beverley April 28, 2022

Easing not eating…?…especially with all of the food references…

    Ragged Clown April 29, 2022

    I fixed it for you Beverley! Thank you for your kind wishes.

    — Kevin

Aline April 28, 2022

Kevin, your post brought up many emotions. I lost my Dad a year ago and he would have been around the same age as you I believe. I wish you the best quality of life possible with your beautiful family and send hugs your way ??.

Jane May 1, 2022

‘The taste of cancer’ reminded me of my ‘cancer meals’. When I was going through my radiation lots of friends and neighbours, (including Mrs L), would stop by with dinners, baked goods and snacks. So much so that I actually put on weight during my treatment! Harry, who was about 12 at the time started calling them ‘cancer meals’ and couldn’t wait to get home from school each day to see what cancer meal we were going to have that day!
It was so good talking to you and Mrs L yesterday, I am now going to go back to blog#1!

Chris Brooks May 2, 2022

Thanks for the update Kevin — I’ve been anxiously awaiting to learn about your status. I suspect you and I have read a lot of the same stoic philosophy classics and I’m confident that this has armed you well for the battles to come. I appreciate the candor and spirit of everything you are writing.

“How does it help…to make troubles heavier by bemoaning them?”

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