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.

The difference a team can make!

Before my diagnosis in the Fall of 2013, I didn’t give much thought to the lung cancer team here in Ottawa. Now I am very thankful for them and glad to be getting to know the folks at The Ottawa Hospital Cancer Centre (TOHCC), and others who’ve been working hard for people affected by lung cancer. There are many I’ve never met, and I don’t have enough pictures – couldn’t even find one of my own oncologist – but here are a few:

Above is Evening of Hope, November 24, 2016, organized by the phenomenal Louise and her dedicated team. It is one of the terrific annual lung cancer fundraising events in Ottawa. Top Left is Elizabeth, who blogged at this link, and changed the face of lung cancer. Her mom, Robyn, is pictured several photo’s below, from last month’s 2K.

Beverly (founding Ottawa support group member) with Chris Draft, NFL Legend & Legendary Lung Cancer Advocate, Sept. 2017
Our wonderful social worker, Diane, with some support group founding members (founded October 2017) – Jill, Andrea, Laurie, Peg, Kayla, Evening of Hope, November 2017
What a difference friends & supporters make! This creative friend surprised us with this lungs-shaped cake at the Cancer Centre on World Lung Cancer Day August 2018!
Anna, TOHCC researcher & prize-winning cyclist / fundraiser, with generous friends
Kayla (founding support group member) and Kayla’s Fight Club have done tremendous work
Michelle, a wonderful advocate and fundraiser, at a CCSN event on Parliament Hill in 2018
Dr. Paul Wheatley-Price, TOH oncologist and President of Lung Cancer Canada, ran the marathon as part of the same week-end event as our 2K, for for Canadians affected by lung cancer. Here he is giving a pep talk! We are grateful for the community of support! #RunOttawa2019 #LungCancerStrong #LungCancerTeamCanada
Paul with Robyn, lovely mother of Elizabeth, at our pre-2K rally #RunOttawa2019

Almost a year ago we held our first ever Lung Cancer Hope Table in our Cancer Centre. It was a special event for World Lung Cancer Day, which is August 1. You can read about that day and what led up to it here.

The first Hope Table was supported by many more people than are shown here!

That one Day of Hope made such a difference that we decided to hold them every month. This is what our terrific team has been doing ever since. Every month we co-ordinate with the cancer centre to have a table set out for us. We keep our supply of information from Lung Cancer Canada, the International Association for the Study of Lung Cancer (IASLC), and other organizations conveniently stored in a generous oncologist’s office at the Cancer Centre. Most importantly, every month we show up at the Cancer Centre to show love and share hope.

Some “Co-conspirators of Hope”, Support Group teammates staffing our table, June 2019.

What an honour to be there to brighten a person’s day! Our team makes a difference for lung cancer patients and caregivers, and everyone who stops by. People who work or volunteer at the Cancer Centre need hope and love just as much as the next person, maybe more. I can’t tell you how many people say things like, “This was just what I needed!” But they don’t need words to communicate the difference we make: we can see it clearly on their faces and in their body language. We are doing important work at the Cancer Centre.

Spring 2019 at TOHCC

This is a great way to tell people we have a support group and invite them to join us! We enjoy spending time together!

Ottawa support group, Fall 2018
Some support group members, Spring 2019

Our lung cancer support group has grown closer together because of these outreach tables. Our group has also grown larger! We have met so many wonderful people because we chose to invest a few hours sharing hope and love at the cancer centre. I want to give a big shout out to our support group for the difference we made at our Cancer Centre this year! Thank you for your great work! Thank you Andrea, for your faithful leadership! You kept us organized, and have established and maintained good relationships with people of our cancer centre!

The Cancer Centre has been very supportive. A big shout out to The Ottawa Hospital Cancer Centre! They supply the tables and have even started paying for our parking! They now post information about our group, with dates indicating when our next table will be. We have worked at building relationships at the cancer centre and earned trust. The oncologists have started telling their patients about us. It is encouraging and honouring that they do this, but it’s much bigger than that.

The amazing Jody, TOHCC
Two dedicated members of our TOH Cancer Centre Clinical Trials Team

When we partner together, then we can truly start making a difference for people affected by lung cancer. There is no limit to what we can do when people who work in differing ways in the lung cancer community partner effectively together. When doctors and social workers and caregivers and nurses and survivors and researchers and fundraisers and communicators and advocates … all work together, we can make a world of good for people affected by lung cancer.

One person can make a big difference by sitting at a Hope table, by getting to know people at their cancer centre, by forming relationships and becoming a team together, and who knows what kind of difference that team can make!

Get to know your lung cancer community! Ask questions! Reach out!

#StrongerTogether #BetterTogether #Team