Emetophobia and Chemotherapy

I took some liberties with the Halloween videos available on Canva this week – lol!

Pretty much since the birth of the internet I’ve been finding and talking to people with emetophobia. My first computer experience with internet was 1996, and by 1998 I discovered, after 39 years, that my phobia had a name and that there were other people like me! By the year 2000 I was a moderator of “emetophobia.org” – a discussion forum that quite quickly went to 10,000 members. There was no such thing as Facebook groups at that time. This website had so much traffic that you could go there any time of the day or night and find someone with whom you could talk. Thank goodness for time zones!

The great thing about a discussion forum (which still exists, by the way) is that topics can be organized into sections, and you can view the topics to see if you’d like to partake of that conversation. Now, Facebook groups have pretty much taken over the emetophobic community. Our latest podcast was about the pros and cons of social media support groups.

Despite changes in how emetophobics talk with one another online, there is always this question, “What would you do if you got cancer? How could you deal with chemotherapy?” Usually the responses are something to the tune of “I’d rather die.” Sound about right? It’s not.

I found the breast lump when I was just 37. My youngest of three children was only 11 years old. My world came crashing down, for a number of reasons only one of which was being freaked out about having to have chemotherapy. I had had some treatment, but I was still terrified of vomiting. I had always told myself that I would rather die than vomit, and thus I would rather die than take chemotherapy. I was serious about this. But let me tell you something: when death looks you right in the face, with a ghoulish sneer and an open door to utter darkness, you’ll take the chemo.

The reason we say we’d rather die than vomit is that our amygdala at the back of our brains is responsible for our survival and whenever it gets triggered it shouts out just one message: “Danger! You’re going to die!” With a phobia, for some reason the wiring in our brain isn’t just right and when we experience the phobic stimulus (nausea or someone else vomiting) our amygdala gets triggered. So we avoid vomiting at all costs, the way we avoid certain death. We believe that vomiting and death are pretty much equal and because we’re not faced with death we fear vomiting more. Avoiding death is pretty simple when you’re young and healthy.

But then actual death comes along. And suddenly they’re not equal anymore, and somewhere in our messed-up brains something clicks as if to say, “ok so vomiting isn’t really as bad as death and I sure don’t want to die.”

I went through surgery, chemo and radiation. The chemo was nowhere near as bad as they make it out to be on TV or in the movies. I only had to have chemo one time (four treatments, three weeks apart). I did get very tired and felt like hell for 2-3 days. They gave me a powerful anti-emetic – Ondansetron (Zofran) – at the time it was $30 a pill but I would have sold my cat, my dog and my TV set for it if I had to. I did not vomit. And this was in 1996 – they have much better, more efficient chemo now and a whole host of anti-emetics in addition to Ondansetron. They can give you a cocktail of about four or five of them at once if need be.

I never had a trace of cancer again. Since 1996 I’ve conquered my emetophobia, seen three children graduate university, watched my daughter dance on stage in Germany as a professional ballerina, held 7 grandchildren in my arms and loved each one like they were my own, celebrated 39 years with my husband, bought a beautiful house, been to Paris, had two wonderful and successful careers in which I helped a lot of people, published two books with a third on the way, and probably a thousand other things I never would have done if I’d said I’d rather die than have chemo. Trust me, life is so much better than death.

The Dreaded Colonoscopy

Often I work with clients who have gastro-intestinal issues. Their doctors almost always recommend a colonoscopy. It’s a simple procedure done under heavy sedation (you’re usually totally asleep, but not under general anesthetic). Most emetophobics aren’t too worried about the procedure; they’re just terribly worried about the prep the day before. Since it’s important that your whole colon is clean as a whistle, you’re usually told to eat no fibre for a day or two, then have only clear fluids the next day, and then drink some form of powerful laxative to clean out your colon. Yes, it’s a day of diarrhea, but it beats paying for one of those “colon cleanses” at a spa, since it’s the same thing and generally paid for by your insurance or medical system. And of course it’s waaaaaay better than getting colon cancer! I myself have had several of these procedures and I don’t mind them at all anymore. Then again I don’t have emetophobia anymore so maybe that doesn’t count.

So why is it “dreaded?” Well, emetophobics worry that drinking the laxative will make them sick. Even though I’ve never talked to a single emetophobic who ever got sick from it. Some folks who have very weak stomachs and are NOT afraid of vomiting report getting sick from it. These people are not you guys! Emetophobics can control vomiting at the worst of times, and this is not the worst of times.

One of my clients, Jessica, has gone through several colonoscopies when she was very phobic, and she was kind enough to write a short post about it. So here it is:

“Three years ago I had whittled down to 100 pounds after being nauseous and having an upset stomach for seven months (an emetophobic’s worst nightmare). I finally got an appointment with a GI doctor who suspected Crohn’s Disease from my symptoms. When he mentioned the colonoscopy procedure to confirm, my chest tightened and heart stopped. How was I ever going to drink all the liquid to prep for it? What if it made me sick? I had only ever heard how terrible prepping for one was.

I made a decision. I immediately went into fight mode, toughened up, and decided to just do it. I surprised myself when it was way easier than I imagined. I was instructed to drink 64 ounces (2 litres) of Gatorade mixed with the prep medicine. To make it easier, I drank the prep/Gatorade mix with a straw over ice. I stayed calm, stayed distracted, and reminded myself it was a temporary discomfort for a healthier me. I watched a tv show and played Yahtzee with my family.

The next morning I went to the hospital, and completed the colonoscopy under general anesthetic. I woke up next to my husband and nurse. My doctor made sure I stayed comfortable in the recovery room as well. They offered me anti nausea medicine for when I was coming out of the anesthesia and warm blankets for my feet. Once I was home, it was like nothing had ever happened. I’ve had two colonoscopies in the last three years and when it comes time for my next one, I will be excited for the best nap I’ve ever had.

Nothing is as ever bad as our heads tell us it is.”

Anna’s notes: 1) Most colonoscopies are not performed under general anesthetic anymore, but rather “conscious sedation.” There’s no nausea afterward. 2) The prep mixtures are getting way better with every passing year. For my last one, I only had to drink a small bottle (less than a cup) of lemon-flavoured liquid the night before and another one the morning of. 3) Jessica met with me for about 14 sessions and is doing great! Thank you, Jessica, for submitting this for me!