Hurry up and Wait, Return of clear fluid diet, and Pancake brain

This past week has been a busy one and also a little reminiscent to the days when I was making frequent trips to the big city for medical follow-ups.  Over the past two weeks, my mom and I have made four trips to Toronto.  Thankfully, three were for the Cityline Makeover and only one was for a medical follow-up.

Cityline update!

Mom and I arrived at the Cityline studio at 8:30am to be prepped for the taping.  Our hair and make-up was completed by 9:30am and the show’s taping began around 10am.   Mom and I were backstage for the majority of the show so I’m not sure exactly what was occurring on stage.  What I do know is that the show focuses on topics about life after cancer.   In addition, the entire audience consisted of cancer survivors and caregivers which was really special and truly a celebratory show.   The set was glamorous and I heard that it was one of the nicest sets they have had on Cityline.  I managed to snap a shot of it before the audience was seated.

The set

The set

Around 10:30am, Janice (stylist) dressed my mom and me in our outfits.  We were revealed to the audience around 12:30pm.   Coming out onto the stage was pretty exciting and I was able to speak on camera with Tracy Moore (Cityline host) for a brief moment.   I was both nervous and excited.  The trickiest part was knowing where to look because there were cameras and screens all over the place.

After this experience, I have a larger appreciation for the T.V and movie industry.  Hurry up and Wait is a common phrase in the industry and after having the two days of filming for Cityline, I have learned that you have to be very patient but also be able to act on the fly.   It was a flurry to get everyone ready and then we all waited until it was our time to go on the stage.  I am looking forward to watching the final cut tomorrow (Tuesday March 31st) when it is aired on Citytv.

Return of clear fluid diet

The second big thing that occurred this week was experiencing my first colonoscopy.   Before being diagnosed with the CDH1 mutation, I figured a colonoscopy wouldn’t occur until I was over 50.  But since colorectal cancer is loosely linked to CDH1, I am starting screening now.

The actual procedure was a walk in the park, however, the prep for the procedure was less than pretty.  The day before a colonoscopy is performed you get to experience a forced detox of your body.  Your diet is clear fluids all day and then a flush (pun intended!) throughout the evening.  I won’t go into all the details but I will say, I was thankful for my ipad and smartphone.

The clear fluid diet was difficult as a stomachless person.  I still cannot tolerate a large intake of sugar and especially if there’s nothing else in my “tube”.   So I ended up drinking chicken and beef broth all day.  I also drank water downed juice.  Within the first 3 hours of waking, I started to feel like a space cadet – fatigued, and just not 100% with it. I could function but definitely was not on my “A” game. The staff meeting that I ran was probably a good one to remember.  It was surprising to see how much your body changes without sustenance.

During the same appointment, I also underwent an endoscopy with dilation.  I haven’t noticed too much of an much issue eating since the last endoscopy in November but since the gastroenterologist was going to look at the anestemosis, he said if it needed dilation, he would perform one.  After awakening in the recovery room, I was told that a dilation was performed and some small polyps were removed from my colon.  The polyps will be sent for investigation but the gastroenterologist assured me that they will be a non -issue.  Yay!  Since this appointment, I have noticed a significant improvement in eating so I guess the stricture wasn’t 100% gone.

Pancake brain

Here in Ontario it is the season where our maple syrup trees are tapped to create maple syrup.  Often, there will be “sugar bush” festivals where you can go see the trees being tapped and eat pancakes.  Inspired by the season, I decided to make some pancakes for myself to eat at home.

Prior to surgery, I really enjoyed eating pancakes.  After surgery, pancakes are something that I have tried numerous times with limited success.  I was not willing to accept that they may be something I shouldn’t be eating anymore.  I have tried at least five different recipes and all come out with the same outcome – first nausea, followed by extreme fatigue and the sweats.  I have now deemed this feeling, “pancake brain”.   This time I ate two pancakes and pancake brain lasted about an hour.  The same thing still happens with me with other foods heavy in wheat flour.   If anyone has a good pancake recipe that they can tolerate post gastrectomy, I’d love to know!

No Stomach for Cancer Spotlight on Gastric Cancer

Last blog post I had mentioned that my mom and I were planning on going to Philadelphia to attend the latest conference on hereditary diffuse gastric cancer (HDGC).  Our trip has now been booked and I am looking forward to connecting with others who have also been affected by CDH1 and HDGC.  I’m hoping to also meet up with some people who have been following my blog.

I can now count down the weeks to the one year mark instead of counting up the weeks post recovery.  It’s amazing how fast time can fly!

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8 thoughts on “Hurry up and Wait, Return of clear fluid diet, and Pancake brain

  1. So cool! I’ll have to check out that video when its posted! Also, I’ll be in DC when you are in Philly for the conference.. maybe I can sneak away for the day to attend. Would be so cool to meet in real life!

  2. You and your mom were awesome on TV today!! What a fun way to spend time with each other! I know you thought you weren’t prepared for the interviews, but you both sounded great. Love the new looks, but still the wedding photo with your Mom is my fave. So sweet…
    Hugs, Sandy

  3. That is so cool that you got to bring some awareness to CDH1! I need to start scheduling my colonoscopies too, it has been far too long. The last time they found a polyp I was 23, but I have been clear ever since, they assure me it wasn’t really an issue, but it can be scary none-the-less. You have to tell me all about the conference! Pumped for you.

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