Research and Hope

Research makes a world of difference! Research is a reason to hope, and daily there are advances in cancer research.

Patients, survivors and caregivers can speak into the research process, making it better. There is need for people who have cancer experience to participate as research advocates.

I’m glad to finally have my computer back and running, the corrupted hard drive replaced. Not having a computer made life and advocacy much more challenging. Even without it, I’ve been busy with a lot of lung cancer activities, including ongoing research advocacy with the Canadian Cancer Trials Group and the International Lung Cancer Foundation.

If you are a lung cancer survivor advocate who is interested in learning and growing as a research advocate, please consider applying to the (IASLC) International Association for the Study of Lung Cancer’s “STARS” program, in which I participated as a mentor for six months last year. Such a great learning opportunity! You’ll need a reference and to set aside a few hours to apply. (The AACR Scientist <–> Survivor Program is also excellent, and open to advocates for all cancers.)

I spoke as part of a team to a group of patient advisors at The Ottawa Hospital in January, with the goal of working together to improve cancer clinical trials. They were engaged and inspiring! We are walking in new territory and innovating new pathways. I’m hopeful.

Our monthly lung cancer hope outreach tables at the Cancer Centre continue with good coordinating work from Andrea Redway, with support from The Ottawa Hospital, Lung Cancer Canada and the IASLC. It is clear that the information and conversations make a real difference for survivors who stop by, many are newly diagnosed or in process of being diagnosed, which is one of the most challenging parts of the lung cancer journey. We are privileged to invite them into community, share information and stories, and (perhaps most importantly) listen. It is clear by their facial expressions and body language that they tend to leave much more uplifted and encouraged. We have an amazing team of compassionate and skilled people. From time to time, we talk about the emotional toll it takes on our team. Most agree that it leaves us feeling a little emotional fatigue by the end of the day, but after a bit of rest we are restored. Overall, this work brings so much joy and fulfilment to team members. We get along well and enjoy each others’ company. It’s really good to work together as a team. I’m very grateful for these people and other teammates who invest a day each month.

There are many amazing people doing good work for people affected by lung cancer and other cancers. What a privilege to get to know some of them, and sometimes connect them with each other! It brings me joy to connect people to form strategic partnerships.

It was great to meet Amy Desjardins, Director of the Canadian Cancer Society, Ottawa Region, in person in January, and to learn that their holiday fundraising appeal which used my story has raised over $280,000 for cancer research.

I’m part of several online lung cancer communities, which offer information, empathy and support. I’ve met many hundreds of people around the world through these groups, and it’s exciting to meet in person. When Kim told me that she was coming to Ottawa for the Family Day long week-end, I asked my kids how they felt about having her family over for dinner. They jokingly gave me the “Stranger Danger” talk! They are very supportive of my lung cancer work because we’ve talked about it and they understand how important lung cancer survivor community and advocacy are. They know that it’s up to us to support people and stand up for better outcomes for people with lung cancer. We were very happy to welcome Kim and her family into our home. It was great to spend time together.

I continue to connect with many people affected by lung cancer and spend hours each month listening, encouraging and seeking to inspire hope. It’s an honour. We have the choice to live in hope or fear, so why not choose hope?

Did I mention that my youngest turned 13 recently? That’s right, now all three are teens and life is wonderful! I can’t tell you how grateful I am to be alive and be here with them and for them. I cherish these precious moments, and hope for many more. I dedicate time and effort to advocacy with hope that this will help improve outcomes for others affected by lung cancer, today and in the days to come.

#Shift

This past week has been one of the best of my life! It has been enormously transformational: I will never be the same. What an honour to represent Canada, to represent lung cancer, and to help spread a little bit of the tremendous amount of hope which is available.

I come home a new person with a deeper calling. I have an even bigger love for people affected by lung cancer, a stronger passion to make things better, and an unbendable will to work hard toward that goal.

It was an honour and responsibility to represent Canada and to represent lung cancer patients at the American Association for Cancer Research Annual Meeting. I worked hard to make you all proud.

Twenty-three thousand people dedicated to fighting cancer gathered in Atlanta, and I wish I could have met them all! Thank you MP Catherine McKenna and your team for the Canada flag pins! I gave out almost 100 Canadian flag pins, and well over 100 business cards, telling our lung cancer story every time. I was honoured by these cancer fighters, and met brilliant leaders in the field, people who cared and listened. They are dedicated to improving outcomes for cancer patients, and research makes a difference! More research means more survivors. I thanked them for their work, and felt honoured when they thanked me for mine.

On my way to share my advocacy story at my poster session

I have many stories to tell, many photo’s to post, and more video posts to come on YouTube. I have been honoured to bring hope to people affected by lung cancer and other cancers, living in Canada and around the world. It brings me tremendous joy to serve as a channel of hope for the lung cancer community. #ChooseHope! … and keep your eyes open for more

I’m so grateful for all I’ve been privileged to experience this past week. It was an honour to represent, and I will keep working hard for people affected by lung cancer.

In the Bleak Midwinter

First of all, dear friends, let me remind you that January is radon month, so if you haven’t checked your home for radon, please do it this week-end! Radon is the second leading cause of lung cancer. Please protect yourself and your loved ones by getting a test kit this week-end and using it! You can read more in my previous blog post: How Two Trips to the Basement Could Save Your Life. Thus ends my radon public service announcement! 🙂

You’re probably wondering what I’ve been up to lately, besides hanging out with my boys and walking the dog. The answer is LOTS!

The Ottawa support group is going well: 13 out at our January meeting. We have an awareness day planned at the General next Thursday. Drop by the Cancer Centre and say hello if you’re around!

Our December Ottawa support group party, with a delicious and generously catered meal from Chances R Restaurant

I’m working at collecting and connecting lung cancer patients across the country, so if you know of any, please send them in my direction! Today I was talking with dear folks in Winnipeg. Yesterday it was Calgary. It can be pretty lonely here in Canada, without other lung cancer friends around! That’s why I’m working to find and connect lung cancer patients in various geographic regions across this large land. I hope we will have patient support groups, awareness days and summits across the country!

There aren’t enough hours in the day! I love serving as a catalyst, a creative problem solver! I’m energized by this work, and eager to meet people, gather them together, and help build lung cancer communities.

I joined the Canadian Cancer Trials Group as (volunteer) patient representative, Lung Site, in November. The CCTG develops and conducts clinical trials, and includes all major cancer centres and many community hospitals across the country. This will afford me the opportunity to meet people doing lung cancer research across the country, and that should help with my community building work! As patient representative, I have opportunities to give input into the clinical trial process at many points along the way. Steep learning curve and big responsibility! It’s important that I get to know a wide variety of lung cancer patients so that I can fulfill my obligation to represent us all. I hope to listen and learn a lot in the coming months and hopefully years. I hope to live long enough to fulfill my three year term commitment. Perhaps another clinical trial will help extend my life once again!

I’ve also applied to the Scientist-Survivor program at the American Association for Cancer Research Annual Meeting this Spring in Atlanta. What a wonderful opportunity to meet researchers, advocates, oncologists and learn many things about research into all kinds of cancer, then pass my learning along to many others! I should hear any day if I’ve been accepted, and I am eagerly hoping!

Christmas Day 2018

But it’s not all lung cancer around here. Sadly, Jono’s Mum is extremely unwell. Jono and our youngest rushed off to Australia right after Christmas to be with her and the rest of Jono’s family. We wished we all could have gone. They shared many joyous times together in the midst of such sorrow, and have just returned home. We’d be grateful if you could spare a prayer or warm thought for the family as it seems the end is drawing near.