Swallowing

Challenges and Choices

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I won’t lie. This past month has been a challenging season, due to pain, nausea, fatigue and breathing challenges. Living with cancer can be very challenging, but thankfully the pain, nausea and fatigue are improving. I’ve had to hunker down and rest a lot, but am thankful to still be able to spend a little time with people, get some exercise and continue to do some advocacy work. We don’t get to choose all of our life circumstances, but we often get choice in how we respond. We can control the things we can control. Choosing to give thanks even in the midst of challenges can be a real game changer.

The upper endoscopy which happened the end of September (mentioned in the previous post) went well. We learned that my esophagus (food pipe) had narrowed to the size of a pin prick. No wonder swallowing was so challenging! The next day the phone rang with an appointment for a stent to be inserted in my esophagus the day after. A stent is a flexible tube to help keep the esophagus open to make it easier to swallow food and drink. I was very thankful for the opportunity to take advantage of a cancellation and get this taken care of quickly. That procedure was harder on me than I anticipated, and I slept for some time in the hospital afterwards. I’m thankful for Jackie Manthorne, President and CEO of Canadian Cancer Survivors Network (pictured below) who waited patiently, helped get my prescription meds and got me home safe and sound. So many people have supported by driving to and/or from appointments. What a good gift! Because this time was such short notice I put a request out on facebook, and had multiple offers within a few minutes. Thanks also to Robyn Denis who drove me to the appointment. So many have offered and have driven, and you have no idea how much it means. Thank you!

Awesome advocate Jackie September 2022
Awesome advocate Robyn 2021
Awesome advocates: Robyn’s daughter Elizabeth with Dr. Paul Wheatley-Price. Photo credit: awesome advocate Chris Draft
Kim Andrea and Robyn – awesome advocates. Photo credit: Chris Draft 2019

I’m very grateful that swallowing is so much easier than it was in September. In addition to liquids and puréed foods, I can carefully chew and swallow soft foods. This helped make (Canadian) Thanksgiving Dinner much more enjoyable. Very thankful for my middle child and her boyfriend who cooked a delicious vegan dinner for us. There was tons of food, mostly on the kitchen counter since it would not all fit on the table. I still eat very small portion sizes, and could not finish all the yummy veggies on my plate that evening.

Canadian Thanksgiving 2022
Canadian Thanksgiving 2022

I’m also incredibly thankful for the gorgeous weather we’ve enjoyed this Fall. I went out walking as much as I could, often with my youngest who I’m so grateful for, and our big sweet dog. Here is some of the beauty we’ve been able to enjoy this past month.

Today I’m especially thankful for two dear friends who popped by this afternoon. We are blessed with so many good people who generously support us. Love and support can make a world of difference, especially during the challenging seasons, and I can’t tell you how much that means.

Could I challenge you to choose a friend or neighbour to reach out to with love and support in the next few weeks? This does not need to be someone affected by cancer, but could be someone going through a difficult season. Please never underestimate the difference you can make for someone!

November is Lung Cancer Awareness Month! What is your Cancer Centre doing to celebrate survivors and raise awareness?

August 2021
Awesome advocate Catherine 2021
August 2021
Awesome Bill Weir Photo credit: Chris Draft 2022
Awesome Lisa Weir Photo credit: Chris Draft 2022
Photo credit: Awesome Chris Draft 2022
Awesome advocates at ribbon build in honour of the awesome advocate Brigitte, 2022
Awesome advocates at ribbon build in honour of the awesome advocate Brigitte, September 2022
Ribbon build in honour of Brigitte. Photo credit: Chris Draft September 2022
Photo credit: Chris Draft September 2022
Photo credit: Chris Draft September 2022

Scan Results, Swallowing and Advocacy

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Time for another health update (with a bit of an advocacy update)!

I had another regularly scheduled CT scan, and like all the scans since I started chemo it showed that the cancer has either shrunk or remained stable. Good news! Amazing news, actually! Even while on a treatment break the cancer is held at bay. So very grateful! Seems like a miracle! My symptom management (palliative care) doctor thinks that perhaps my immune system now recognizes the cancer as something to attack. Really great news!

I haven’t heard a recent update, but it seems the clinical trial I’m hoping for probably won’t open up in Toronto until maybe December or next year. Ottawa probably won’t open it until the Spring. There are many hoops to jump through, and COVID has affected cancer research which affects so many people. The good news is that it does not seem so urgently needed by me right now. Of course urgency matters tremendously, as things can change very quickly. We never know how long we may be able to wait, and there are many people who need more treatment options urgently. Survivors matter!

More research means more survivors and better survivorship! I continue to pursue a variety of advocacy efforts, including cancer research and fundraising for research. Today, among other things, I connected with the Canadian Cancer Society who want to share my story again, and people from the Ontario Institute for Cancer Research and Canadian Cancer Trials Group. I also messaged Prime Minister Trudeau about lung cancer.

But back to the health update … I’ve faced swallowing challenges since the summer, even though I’m very careful when eating or drinking. I lean forward and place my chin on my chest when I swallow. I’m eating a lot of soup and some other very soft foods, one very small mouthful at a time alternating with sips of water. I only eat very small, very healthy meals, and try to eat four or five times per day to get as much nutrition as I can manage.

I reached out to the Speech-Language Pathologist who helped me a couple of years ago when I was having swallowing issues previously and did the swallowing study. She is lovely and we had an online appointment last week where she gave me a lot of helpful tips and reassurance.

A referral to an Ear Nose Throat doctor was made, with an upper endoscopy scheduled for this afternoon. I’m looking forward to learning what the procedure will tell us, though a little nervous about having a camera stuck down my throat. There will be sedation, and I think my kids are looking forward to seeing if I’ll still be feeling the effects when I get home. Apparently some people don’t remember anything about the procedure, so I’m hopeful it won’t be as difficult as the similar procedures I’ve had before.

November is Lung Cancer Awareness Month. What is your Cancer Centre doing to celebrate? #LCAM

Jill’s Hope Mango Smoothie Recipe

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Choose hope

I’m excited to share this recipe with you because this has been my favourite smoothie for many years. When swallowing was challenging in the winter of 2020-21, I was not even able to swallow this smoothie. I did some tests, then some exercises given by Emilie (pictured below), a lovely Speech-Language Pathologist. (Those who are interested can read more here: https://throughthevalley.ca/2021/01/20/health-and-advocacy-update/.) Swallowing improved and has been good ever since. For some time I’ve been able to eat just about everything. I still really enjoy this smoothie and want to share the recipe with you. Thankful!

We can go through times when it’s hard and we can start imagining that things will only get worse, but that’s not necessarily true. We can ask for help. Things can turn around. We can choose hope and hold onto hope!

Jill’s Hope Mango Smoothie Recipe

  • Approximately 1/4-1/3 cup of mango
  • 3-4 celery stalks, chopped
  • 1 Tablespoon peanut butter
  • 1 scoop plain protein powder (unsweetened, unflavoured)
  • Milk to fill it to the max level

Blend it all together and enjoy!

Keep holding onto hope!

What is your cancer centre doing for World Lung Cancer Day August 1?

#TheWhiteRibbonProject www.thewhiteribbonproject.org

#hope

Health and Advocacy Update

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First the good news: I haven’t had a scan yet, but based on my perception, the chemo seems to be working! I’m breathing better, coughing less and swallowing a little better. Good news! So very grateful for another extension on life!

I had my third round of chemo on Monday January 11, and brought in one of the amazing white ribbons that Heidi and Pierre Onda from Colorado have been generously making and sending out with love to whoever asks for one. This is an inclusive, unbranded campaign to raise lung cancer awareness, and it goes by the hashtag #TheWhiteRibbonProject. It has a growing presence on social media and at cancer centers across North America.

This exciting campaign is growing, and here’s a video (generously made by Katie Brown of LUNGevity) which gives you a small taste of the number of lung cancer advocates, oncologists, researchers and others who have keenly participated. If you look closely, you may recognise awesome Eastern Ontario advocate Kim MacIntosh near the end, and me with the chemo receptionist at The Ottawa Hospital. That first video got stuffed full of photo’s, so Katie started a second one, and then a third one for Canada, and she keeps adding photo’s as we send them to her! Everyone is welcome to participate!

There I go again: I was supposed to be giving you a health update but got distracted by some of the amazing advocacy work that is going on!

Healthwise, so far I have had several really rough days each three week cycle. I spoke with a nurse to get insight on how to better manage the symptoms. I’ll plan and prepare, and this will help me better cope next cycle. I’ll also keep managing my mindset. I’m grateful for Chris Draft who calls and encourages. He is a tremendous advocacy trainer, and offers helpful wisdom like, “We control what we can control”. He is a strong supporter of so many health advocates worldwide, and we are grateful.

Exciting news: my barium swallow study is scheduled for this afternoon (i.e. Tuesday the 19th)! Ordered back in November, I’m very hopeful that this will answer questions about what is happening when I swallow, and give us good information to help me avoid getting aspiration pneumonia again. I also hope to be able to eat more kinds of foods! I have eaten a LOT of soup since the summer!

I’m back from the hospital, and the study went well. I felt a little nervous beforehand, but very relaxed this afternoon and grateful for the support from my support team of friends and also The Ottawa Hospital team. Emilie, the Speech-Language Pathologist was very kind and knowledgeable. She got me to sample a variety of textures of food and drink with barium added in, then the x-ray machine tracked what happened inside. I didn’t choke on anything. We gained new information which informed us about which further tests need to be ordered. I’m being referred to more specialists, and that support is very welcome. I feel privileged to live so close and be connected to the tremendous resources at The Ottawa Hospital.

Here is my amazing Speech-Language Therapist who ran the test. She was eager to take a picture in support of lung cancer awareness, and very supportive of this person affected by lung cancer. I’m very grateful for our big lung cancer team!

Emilie, The Ottawa Hospital Speech-Language Pathologist
  • Chemo nurse
  • Oncology physiotherapist
  • Friend living with lung cancer
  • Awesome oncologist and advocate
  • Survivor advocate sisters
  • Strong support team member
  • Awesome Kim MacIntosh
  • Awesome Andrea Redway
  • Chemo receptionist
  • Chemo nurse
  • Representing the awesome team: Jordan & Kayla MacWilliam, the Bradford family and Kayla’s Fight Club

Friends make life better

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I’m so grateful for friends! Several of my friends are Speech-Language Pathologists, which means that they are experts who do tremendously important work helping people communicate better. Some S-LP’s are experts in helping people swallow better, and today a swallowing expert colleague of one of my S-LP friends came over to watch me swallow a variety of things and give me information about how to avoid choking or aspiration pneumonia. I learned that while swallowing is something we generally do without much thought, it’s actually quite complex and there are many ways it can potentially go wrong. I’ll need a barium swallow test (which involves ingesting radioactive food & drink, and watching what happens to it) to give us more insight into what exactly is going on when I am swallowing.

Many of these are definitely not on the “easy to swallow” list.

I was very grateful for the swallowing expert who came over today. She taught me about the mechanics of swallowing, and gave me a long list of practical tips to help things go down more easily. I feel more empowered to fuel my body better with less risk.

The very brief summary of the plan is to patiently stick with puréed soup and other soft mushy foods. Definitely worth it if that means avoiding pneumonia!

I’m so very grateful for friends and colleagues of friends!