Lung Cancer Awareness Month

Lung Cancer and the Canadian Cancer Society

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In my earlier days advocating for people affected by lung cancer, I heard rumours that the Canadian Cancer Society (CCS) didn’t give a fair amount of funds for lung cancer research. I did not know if that was true and believed it was important to find out. I determined to investigate, and learn how to advocate about this, but the Canadian Cancer Society seemed so big. I felt intimidated at first and did not know how to start.

Advocacy is relational work, and with encouragement from Chris Draft I worked on getting to know people at the CCS (and other organizations) and building relationships. People from the CCS reached out to me also and asked me to participate with them in various ways. They were interested and listened empathetically as I informed them about lung cancer.

For several years now I have been working with the Canadian Cancer Society. I have served as a panel member, speaking into the decision-making process about which research gets funded. I’ve shared my story quite a few times to raise support for cancer research in Canada and to inform and increase support for people affected by cancer. And of course there have been many conversations with thought-provoking questions and honest dialogue.

This year my lung cancer story is being used again as part of their holiday fundraiser, and also another big fundraiser in the new year. I’m glad to be part of significant cancer research fundraising as a multidisciplinary team member and that my advocacy training and life experience can make a difference.

Earlier this Fall I was also invited to be part of a panel member for the CCS Breakthrough Team Grants: Transforming Low Survival Cancers, specifically lung cancer and pancreatic cancer. (More info here.) It was very exciting to be asked to be part of this, especially due to the lung cancer focus, and I quickly agreed and submitted my “paperwork” to sign up.

Since advocacy is relational work, like so many other advocates I have worked hard to build relationships and partner with researchers and advocates from coast to coast to coast (and around the world). This has gone so well that when I filled out my Conflict of Interest form for the CCS Breakthrough Team Grants I realized that I knew and had partnered in research with a very large number of the research team members who had applied for funding. It was not a huge surprise, but very disappointing that the CCS team (after careful review) determined that I know and have worked with too many applicants to be a panel member this time. This time did not work out, but I’m definitely open to future opportunities.

The Canadian Cancer Trials Group (CCTG) is a national program of the Canadian Cancer Society. I’ve been part of the patient representative committee and lung executive with the CCTG since 2018. I’ve also spoken about lung cancer at CCTG Annual Meetings several times. Very grateful for the good work the CCTG does.

For quite a few years, I have been continuing to have conversations with people from the CCS about things related to lung cancer. They are generally eager to engage, and we are thrilled that this year there is special lung cancer specific funding available and that lung cancer researchers have applied. This increases hope and potentially can make a huge difference for many people affected by the deadliest cancer.

On average, 82 people in Canada are diagnosed with lung cancer every day. Lung cancer is the deadliest cancer, killing more people than the next three deadliest cancers combined.

More research means more survivors and better survivorship. Here’s to more research!

Dr. Vicky Forster and I at the Toronto CCS offices October 2019

November is Lung Cancer Awareness Month (LCAM). What is your Cancer Centre doing for #LCAM?

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

Happy One Year Anniversary to The White Ribbon Project … What is your Cancer Center doing for Lung Cancer Awareness Month?

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  • Heidi and Pierre

I first met Heidi in a Zoom call organized by Team Draft the summer of 2020. Right away it was easy to see that she is a loving person who genuinely cares about people. A few months later she told us (in a zoom call organized by Team Draft) that she was fed up with her cancer center’s reluctance to promote lung cancer awareness, that she had asked her husband Pierre to make a big white ribbon for their door, and then they started making them for friends and strangers. She generously sent them out to everyone on that call, even me in Canada. I was the only Canadian on that call and, knowing that international shipping can be expensive I didn’t want to ask. Heidi’s love and generosity made my concerns seem ridiculous. She wanted to give ribbons to everyone willing to stand up for lung cancer, to make people feel cared for. Heidi is rare and meeting her was very special.

Those first few ribbons have multiplied into a movement! Hundreds of lung cancer advocates are rising up with their ribbon, taking photo’s and posting on social media, raising lung cancer awareness across the US and Canada, and the Netherlands, the Philippines, Ireland and expanding across Europe in partnership with Lung Cancer Europe, as well as other growing international partnerships. Together we are driving change.

  • Niels Harthoorn, The Netherlands
  • Niels Harthoorn, the Netherlands
  • Ronaldo Peralta, the Philippines
  • Dr. Jarushka Naidoo and members of Team Ireland

Heidi and Pierre have made 832 ribbons, and also assisted at other builds as they traveled around the US on The White Ribbon Project Tour. Heidi and Pierre have paid for all the ribbons they have made and sent, and all their expenses on the six-week tour. As they travelled around, rather than taking donations, Heidi and Pierre encouraged people to invest in their local community, to form a team, host a build or contribute to one, participate in making ribbons with love and giving them with love. Teams have been forming in many communities, and this is where the action happens!

We are very grateful for teams in Canada like Lisa and Bill Weir who have made 244 ribbons, Alvin and Carolanne Johns who have made 45, the Monds’ team who made 20, and others who are in process of team building.

The Ottawa team held a community build in solidarity with The White Ribbon Project Tour. People contributed their time, talents, supplies, food, drink, even hand sanitizer. In keeping with the inclusivity of The WRP, patients, caregivers, survivors, family, friends, doctors, nurses, administrators, politicians and others were invited. There was much love and laughter at our outdoor venue that hot August afternoon. What a gift to be together, building relationships as well as ribbons, loving and serving our community.

The Ottawa team knows that advocacy is relational work which doesn’t just happen during Lung Cancer Awareness Month in November. We are committed to making people aware and making people feel loved year round. That’s why we set up outreach tables in our cancer centre to welcome people, show them love and give them information. We started annual summits to gather the community and offer learning opportunities. We also gathered a team to put together a welcome package which includes a letter from lung cancer survivors with contact information. This is given out year round, to everyone newly diagnosed. The Ottawa team made a choice to be involved in making people aware, and making sure people know they are loved.

What is your cancer centre doing for Lung Cancer Awareness Month this November? What is the plan for lung cancer every day?

The White Ribbon Project is committed to making sure people affected by lung cancer know they are not alone. Together we are committed to changing the public perception of lung cancer. Together we are driving change. It takes a team of people who decide to take action to get the job done. Let’s work together! 

#TheWhiteRibbonProject #love #hope #inclusive #unbranded #international

www.TheWhiteRibbonProject.org

Share my dream!

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Last night I had a dream

Enormous football arenas were overpacked with wildly cheering fans. The commentators were all familiar to me. Multiple cities across North America and around the world were showcasing similar events. Each was being telecast live, and I could see multiple large screens with views of the action around the world. Our view kept switching from location to location because there were so many action-packed venues. The energy in the arena was like nothing I’d ever experienced. The sound was deafening. The air electric. The crowds were cheering enthusiastically as lung cancer researchers made advances.

Lung cancer researchers? Yes, researching right on the field, and the commentators all were lung cancer advocates/activists/fundraisers, and I was one too, in my own arena. And we were doing the play-by-play, telling the crowds at home what was happening on the field. There were all kinds of half-time type shows, and great celebration and pageantry. Cheers would erupt as we would learn of advances in other stadiums. We were celebrating wildly!

And Chris Draft* would show up in one city after another, wild cheering breaking out whenever people saw him in their own city or on screen at a remote location. He would spend time with the commentators and with the crowds, and everyone would celebrate! He’d encourage everyone and the cheers would erupt and then he pop over to his next venue, and it would happen all over again.

Every arena, all around the world, enthusiastically cheering on lung cancer research! Advances being made in treatments and all manner of discoveries!

That is a dream worth having! An even better dream is for lung cancer to be cured!

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Chris Draft of the Draft Family Foundation: Inspiring Advocate!

* Chris Draft is a former NFL linebacker. This month, he and Keasha Rutledge Draft would have celebrated their seventh anniversary. She died of lung cancer. Chris tenaciously continues the legacy they both started. He is a tremendous lung cancer advocate, strategist and mentor. He is a hero to many of us in the lung cancer community. I am grateful to him for supporting and encouraging me, and teaching me so much! He has come to Ottawa several times, and phones regularly.

Chris started the Super Bowl Challenge, where lung cancer survivors compete to raise money for lung cancer research. Whoever raises the most gets a free trip to the Super Bowl. The second and third prizes are pretty good too!

I entered because I really want to go to the Super Bowl, but more than that, I want to raise money for lung cancer research. This is something I’m obviously passionate about!

I’ve met many wonderful people with lung cancer. Interesting, funny, generous, thoughtful, smart, caring people. People who are very much loved by their family, their friends. People who have made a tremendous difference in their communities and elsewhere in the world.

I love these people and I can’t tell you how much I want better outcomes for them, for us!

With 1 in 12 people getting it, you probably love someone with lung cancer too.

Please, help me raise money for lung cancer research! Would you give, and ask your friends and family to give as well?

Our family and friends are singing our lungs out for lung cancer research this month! We’re doing a song a day and posting them on YouTube. We call it “Love Songs for Lungs”, and we’re raising hope, awareness and funds for lung cancer research. We’re having a lot of fun doing it! If you haven’t seen us yet, check us out! And if you like what we’re doing, please “like” our songs and tell your friends, because that will help too!

Here’s the link to support lung cancer research, the good work of Chris Draft, and maybe even help me win a trip to the Super Bowl:

https://www.crowdrise.com/o/en/campaign/jill-hw-love-songs-for-lungs

And if you haven’t seen our songs yet … please check them out! Today will be #19, a classic love song done in a new way with a friend I’ve known since elementary school.

Here’s my YouTube channel: https://www.youtube.com/channel/UCe_-U2z2imwrQpKikpisxgQ/videos

Thank you.

Ottawa Lung Cancer Support Group Oct 2018 Cecilia Kim Jill Mariel Andrea Peggy Laurie Jan taken by Diane

Our beautiful Ottawa lung cancer group. (you may recognize Andrea (front left) from a “Love Songs for Lungs” video!)

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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