#LCAM

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

STARS in Spain

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The International Association for the Study of Lung Cancer (IASLC) has a new program for training patient research advocates, called STARS. The six-month training process began back in May when five Patient Research Advocates were chosen from around the world. It continues with webinars, calls and mentoring, culminates with the IASLC World Conference on Lung Cancer next week, and concludes with presentations in October.

The IASLC Supportive Training for Advocates on Research & Science (STARS) program aims to increase the number of Patient Research Advocates (PRAs) equipped to provide accurate scientific translation in their online or real-life lung cancer patient/caregiver groups and to provide the patient perspective for lung cancer research and policy.

More here.

I am very happy to report that Canada was chosen for one of the STARS positions. Our very own Kim MacIntosh, who lives in Cornwall Ontario and is part of our Ottawa Lung Cancer Support Group, is one of only five STARS worldwide! She has been learning more about lung cancer research and advocacy through webinars and conversations. Each one of the STARS is paired with a mentor for six months, and I’m delighted to be a mentor for Kim. We are both treated at The Ottawa Hospital.

Kim (with Chris Draft and me) at our #LungCancerStrong event in May 2019. Kim was a valuable planning team member who got the tee shirts printed and organized.

The IASLC World Conference on Lung Cancer (#WCLC19) is the world’s largest international gathering of clinicians, researchers and scientists in the field of lung cancer and thoracic oncology. This year it takes place September 7-10 in Barcelona. Kim and I will be there, representing Canada, along with Christine Wu who earned one of only five IASLC patient advocacy travel awards for her hard work in lung cancer advocacy. Among other achievements, Christine helped start the Winnipeg support group. I look forward to connecting with people, examining best practices and exploring partnerships that will best serve the Canadian community.

We know that representing Canada at #WCLC19 is a privilege and responsibility. We welcome questions, and will do our best to track down experts there to answer them. We will be sharing information about new lung cancer research with other lung cancer advocates who are leaders in their communities, and posting on YouTube, facebook, Twitter and Instagram. Please follow us and share the news about lung cancer research. It’s up to all of us to share about the exciting advances which are changing outcomes and extending lives.

Christine (above) and some Canadian survivor advocates & friends who have been to LUNGevity’s Hope Summit, Washington DC, 2019 and 2018 (below right)

I owe a debt of gratitude to many people and partners who helped prepare me for this mentoring role in the STARS program. I am especially grateful for the American Association for Cancer Research Scientist <–> Survivor Program, which I participated in last Spring at the Annual Meeting in Atlanta, #AACRSSP19. There cancer advocates were engaged, equipped, and honoured for their work. I am also very grateful for the ways I am learning through serving as Lung Site Patient Representative for the Canadian Cancer Trials Group, and the mentoring of International Lung Cancer Advocate Chris Draft.

Are you going to #WCLC19? Is your doctor? If you or anyone else you know is going, please be in touch and encourage her/him to connect with me. I’m looking forward to meeting more members of our lung cancer community!

What is happening at your local cancer centre for Lung Cancer Awareness Month (#LCAM)? At The Ottawa Hospital Cancer Centre, our team of survivors plus Ottawa Hospital people have already started planning our second annual survivor-driven Lung Cancer Summit, geared to the Ottawa community. This is a great opportunity to share exciting new research from the World Conference for Lung Cancer out into the community.

Dr. Paul Wheatley-Price is a stellar Ottawa Hospital oncologist, and President of Lung Cancer Canada. Andrea Redway (in the background with the white hat), is a great friend and Survivor Advocate. I am grateful for such dedicated teammates.

Cancer Centres plus advocates are a great combination! If we don’t tell people about exciting advances in lung cancer research, who will? It’s up to us to spread the news about the difference lung cancer research is making for survivors! #ResearchMatters #ResearchWorks

Please let me know what is happening in your community.

Jody of The Ottawa Hospital is awesome! She works hard to make her administrative endeavours appear effortless. She is a great support and encourager!


Saying Yes to New Adventures!

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I did something new and exciting … and a little scary!

You can read more of the story below, but right now I just can’t wait to tell you my exciting news!

For Lung Cancer Awareness Month, I made a short video called, “What can Jelly Beans Teach us about Lung Cancer? You might be Surprised!”

I’m proud of this little video! It’s my first attempt and it’s rather rough, but it’s real and from the heart, and I’m honoured to share it with you!

This whole adventure started back in October when I chose to have a week of saying yes! I decided I would stretch beyond my comfort zone and do things that frightened me!

The next day, the phone rang and I was asked to speak at a fundraiser for Lung Cancer Canada. I said a fairly quick yes, and then started thinking about it!

The more I thought about it, the more nervous I got!

The fundraiser would be in a restaurant, but there wasn’t going to be a microphone, or even a section of the evening when I would give a speech. Giving a speech like that makes me nervous, but I’m getting used to that kind of nervous.

No, this time I was expected to initiate conversations with a bunch of strangers and somehow find a “natural” way to tell them things about lung cancer. That is scary for me!

I couldn’t imagine how to make this happen. I mean, I could easily picture far too many awkward ways of doing it, but there had to be a better way! What would help me feel more comfortable starting up conversations? How could I teach a bunch of strangers about grim lung cancer statistics at a restaurant?

So I came up with an idea! I got a few items together and worked out a little interactive spiel, and then I went to the fundraiser.

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I did not expect it to turn out so well! The woman organizing the fundraiser was so lovely, and the family and friends who had shown up to support her were kind and encouraging. Most of them wanted to hear what I had to say, and quite a few were very keen. I gave out some of the Lung Cancer Hope Rocks too! #LCRocks

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What was so powerful for me, though, was to watch the looks in their eyes as the penny dropped. Wow! These simple jelly beans were helping the message get through! When those moments kept occurring throughout the evening, I had a growing conviction that I needed to find a way to get this important message out to more people.

So that’s why I said yes to another scary idea and made the video!

Obviously, the video isn’t an interactive dialogue like all my jelly bean conversations have been, but because this is such an important message, I’ve chosen this media to communicate more broadly than I could do in small groups or individual conversations.

November is Lung Cancer Awareness Month! Please honour me by setting aside ten minutes: seven minutes to watch the video and three minutes (or more!) to consider what your response will be.

There are many people who played various roles in helping, supporting and encouraging me along this whole jelly bean journey. Thank you! I am especially grateful for the technical support and encouragement of Jith Paul of Treepot Media. Thank you, Jith, for your partnership in the making of this video. I literally could not have done it without you!

jelly bean lungs