A team of five cancer advocates are excited to announce that the article we wrote was published today!
A year ago today, Diane Manii and I were travelling to Banff Alberta to participate in an international conference for professionals who support people living with cancer.
My goal was to represent people with lung cancer and introduce myself to as many people as I could, kindly challenging them to do more for people affected by lung cancer.
I brought a pile of Canadian flag pins from the office of Catherine McKenna, my elected official. I’d been to her office for pins quite a few times in recent years, and her staff were always generous with pins and pleased to talk about lung cancer with me. Pins are a great excuse to build relationship, near and far. I gave out quite a few in Banff, while telling my lung cancer story to people and asking lots of questions about them and the situation where they work.
I had great conversations with a wide variety of people, including some that I had met prior to the conference. There are so many skilled and caring people working in the cancer world, but the people at this conference – social workers, physiotherapists, psychologists, and the like – asked me way more questions about my family and my cancer journey than most people typically do. I felt cared for as a person, and that was a good gift.
Many people came to hear Diane and me, when we presented about the Ottawa Lung Cancer Support Group. They listened intently as we spoke and asked thoughtful questions afterwards. I deeply hope that many of them have started up lung cancer support groups in the past year. We certainly challenged them to do so. If you want to start up a support group, it’s not hard and there are lots of people willing to help. Diane was an excellent leader who really got us started well, then left us in the very capable hands of Dr. Sophie Lebel when she retired.
For the first time ever, this conference was “Patients Included”, not only incorporating experiences, but also offering five scholarships for people affected by cancer to participate in the full conference.
These scholarships were earned by: Lorna Larsen (@TeamShan Breast Cancer Awareness for Young Women), Karen Haas (@caringcancermom Childhood Cancer advocate mom), Margaret Ng (Brain cancer survivor and wellness worker), Dr. Vicky Forster (@vickyyyf Childhood cancer survivor, cancer research scientist and science writer), and myself (@JillHW lung cancer survivor advocate). It was great to be able to connect with them all!
Vicky and I met when I was looking for a spot for lunch and noticed an empty seat beside her. It was a treat to meet someone so likeminded and engaging. Like me, she is a real people person and connector. We quickly discovered that we were both going to be in Toronto a few weeks later to serve as patient representatives with the Canadian Cancer Society.
We’re excited to share with you this paper about our experiences attending the conference. It is written by all five advocates, and Vicky Forster gave great leadership to the process, putting her connecting and communicating skills to work. Thank you, Vicky!
Research shows that partnerships lead to better research! Thank you to the International Psychosocial Oncology Society, The Canadian Association of Psychosocial Oncology, Dr. Fiona Schulte and Dr. Linda E. Carlson for strongly supporting patient/survivor advocates.
What is the connection between geese and lung cancer research? Why did “research” immediately spring to mind for the Sixth Day of Giving to Lung Cancer Clinical Trials?
The connection is the goose that laid the golden eggs. That is research. It may not feel like it to some researchers working away in their lab, but it is true!
This is a fabulously exciting time in lung cancer research! New treatments are being approved and people are living longer and better. We are expanding the horizon of the possible.
LUNGevity put out a compelling video last month with stories from people directly affected by lung cancer clinical trials. The link is below. Please take three minutes to watch it. “In the last three years, the FDA has approved more lung cancer treatments than in the last three decades, thanks to clinical trial patients.” The survivor stories are gripping.
I’ve been to just a few of the many conferences where lung cancer research has been presented this year, and it is phenomenal! There is no rush quite like the realization that thousands of brilliant and dedicated people are working hard all over the world to find cures for people affected by cancer.
We are seeing success! The research is working! New treatments for lung cancer are being approved at record rate! People are living longer and better.
We’re not there yet.
Research keeps laying golden eggs. Let’s be generous in our support.
Research works. Research matters. People matter. We need more research.
If you were thinking about giving me a Christmas present this year, or making a tax-deductible end of year donation, please give to lung cancer research here. Thank you.
Click here to see the video It will open up to another page where you can click on the big picture to watch it. You can also see individual stories if you click on the smaller pictures below. It was an honour to be part of this project, because clinical trials matter. Thank you, Linda, Jack, LUNGevity and the whole team. You did a great job!
All it takes is two. Put two lung cancer survivors together and anything could happen! Get three together and it could be a support group!
There’s nothing like meeting someone you really connect with! It has happened time and time again, the spark, the recognition that someone else gets it, they understand your experience, and they care.
Two survivors together is powerful. There is strength in numbers, and two is enough. Get three and now we’re really cooking! There is no telling what could happen!
Two survivors plus a social worker or psychologist, or any third who is willing to lead, and all kinds of good could come of that. Just ask Alyson and Christine about what happened in Winnipeg less than a year ago. The lung cancer support group they started in Spring of 2019 stood up and clapped with gratitude for them. They just celebrated the holidays with a party this week! What a difference this support group is making! Way to go, Alyson, Christine, Mike, Kelly and team!
It may seem hard to start a support group, but it’s not too hard. People do it all the time. Support groups are best practices and they do good for people around the world. It’s not too hard to start one. There are courses in leading groups, lots of books, experienced leaders, and other resources to learn from. Right in cancer centres all over the world, there are loads of trained, caring people working in psychosocial oncology. It’s not too late to learn. Alyson and Christine asked a lot of questions when they were getting started, and a social worker here in Ottawa helped them connect with teammates in Winnipeg. Reach out! Ask questions! Support groups are best practices, and lots of people could benefit if we had more of them.
We’re very grateful for the lung cancer support group in Ottawa. It was started (in October 2017) by Social Worker Diane Manii and a team here in Ottawa, with Lung Cancer Canada and the Ottawa Regional Cancer Foundation. It continues with their support and the support of The Ottawa Hospital. There is much generosity toward the Ottawa support group, and strong support within the group. The group has also started reaching out at the Cancer Centre with monthly hope tables (since August 2018) which are greatly appreciated. The group participated in Ottawa Race Weekend (#LungCancerStrong) in May 2019, raising funds as “Lung Cancer Team Canada” for Lung Cancer Canada, and growing numbers are participating in political advocacy for lung cancer.
I’m very grateful for the women and men I’ve met through our Ottawa support group. They are silver linings of lung cancer.
If you don’t have a support group and you would like to explore starting one, please start looking around and asking questions. You may be in an area where it may not look like there are enough people or resources for a lung cancer specific group, but don’t let that discourage you. People are willing to help; reach out!
Once you have three, there’s no telling what you can do!
To celebrate support groups and survivorship, please give generously to lung cancer research!
When I sit back and reflect on 2019, it has been an amazing year. I’ve been able to meet so many new people, deepen relationships, and learn many things. The lung cancer community and advocacy work have both grown significantly. There are so many stories to tell and blog posts to write!
When I look back, I clearly see growth in the numbers of lung cancer survivors who are stepping up and standing together to make a difference for others. This is largely due to the difference that new treatments make for us. Many of us benefit from targeted therapies, pills that we take daily which keep us alive and help us live fairly normal lives. Some benefit from immunotherapy, and the numbers of those who are doing well a year or more off treatment are increasing. Lung cancer research is making a difference. We rejoice and celebrate!
Anyone can get lung cancer. Increasing numbers of younger women are, and we have no idea why. We need more research to extend lives. More about this at the end of this post, and I plan to share some good news very soon.
The Ottawa support group is growing tremendously. The hope outreach tables that Andrea Redway organizes every month continue to make a real difference at the Cancer Centres. We have deepened relationships and built trust within The Ottawa Hospital, so that staff are excited about the tables and promoting them. Andrea, Kim MacIntosh and I gathered a team and entered race weekend as “Lung Cancer Team Canada”, raising money for Lung Cancer Canada (who sponsors our support group and provides patient handbooks to distribute), and showing that we are #LungCancerStrong! There are now two of us who serve as Patient Relations Advisors at The Ottawa Hospital, and I am slated to share my story there next month. I spoke at Grand Rounds with Dr. Terry Ng in June on biomarkers, a real honour and humbling experience. Another big highlight was our Second Annual Living with Lung Cancer Patient-Driven Summit in November, organized by Andrea, Dr. Paul Wheatley-Price, Jody Chaters and me, in partnership with The Ottawa Hospital, with support from LCC.
Across Canada, the most exciting highlight was the forming of a second lung cancer support group. Alyson is an advocate in Winnipeg who I’d been mentoring for some time, and she was doing great work. Wanting to grow the team, I kept looking for another lung cancer patient/survivor/caregiver in the city, who seemed interested in doing more. I found Christine’s wonderful blog and reached out to her. Together Alyson and Christine started connecting more with their lung cancer community, forming relationships with people at their cancer centre and looking for ways to serve their community. They wanted to start a support group. Our Ottawa Social Worker, Diane Manii, connected us with a social worker in Winnipeg, and the Winnipeg lung cancer support group started in the Spring! Group members stood up and applauded Christine and Alyson because they were so grateful they had started the group, which is flourishing!
Christine is in the middle with her husband, and Kim on the right.
I continue to serve as a patient research advocate, including as the patient representative for the Canadian Cancer Trials Group lung site. This Fall I served on the panel for the Canadian Cancer Society Team Survivorship Grants, and it was an interesting process, giving out $10 Million for cancer research. Sadly, none of it went to lung cancer research. I hope to learn why no lung cancer researchers applied for this grant money and work to drive change for the future.
The Canadian Cancer Survivors Network provided political advocacy opportunities at the local, provincial and national levels, and growing numbers of us took advantage. We are grateful for their ongoing commitment to and support of lung cancer survivors, and that they do very well at smoothing the pathways for us to be more easily involved in political advocacy.
It’s hard to say what my international highlight was for 2019, but I think it was participating as a mentor in the International Association for the Study of Lung Cancer (IASLC) inaugural STARS program for training patient research advocates. What an honour that Canada was chosen as one of only five teams, and both of us from The Ottawa Hospital! The six month process of mentoring Kim was enjoyable and rewarding. She has grown and flourished as an advocate. She is more knowledgeable and confident. She is finding her voice and using it in strategic ways. She spoke at our summit, has been tweeting effectively and growing relationships in Ottawa and beyond. It’s a joy to continue the mentoring relationship past the October endpoint of the program.
Part of the STARS program was held at the World Congress of Lung Cancer in Barcelona Spain in September. It was exciting to gather with so many people, all committed to conquering thoracic cancers worldwide! What a good gift to connect with advocates from around the world, united with shared passion. Some of us are exploring an international research project. I gave out many Canadian flag pins, generously supplied by MP Catherine McKenna, and also represented Canada by participating in a series of videos put out last month by Lung Cancer Europe (LUCE), which were filmed while we were in Barcelona.
Advocates at World Conference on Lung Cancer in Barcelona
It was great to gather so many Canadians at LUNGevity’s International Lung Cancer Survivorship Conference in Washington DC in April. LUNGevity shot video there which was made into a terrific video about clinical trials and released last month. It was an honour to be included. Through the generosity of a kind family, I was able to attend the ALK+ lung cancer conference in Atlanta in August, and while there I taught on Advocacy.
Social Worker Diane Manii and I presented about our Ottawa support group at the International Psychosocial Oncology Society Conference in Banff AB in September. I was surprised at how little was presented on lung cancer, but I learned a lot and met amazing people. Our presentation was very well received.
Participating in the American Association for Cancer Research’s Scientist <–> Survivor Program at their Annual Meeting in Atlanta in the Spring was a wonderful experience that opened doors. We learned volumes, met tremendous people, were greatly honoured as cancer advocates and came home changed. I am even more committed to lung cancer advocacy, and so very grateful.
I am also very grateful for Chris Draft who is a tremendous mentor to many in the lung cancer community, including me. Around the world, people speak highly of him and the difference he has made for them. He is making a real difference, supporting and encouraging us so that we can do more. His intentional engagement with a wide variety of people, and lengthy NFL experience result in a strong network with many connections who support his work in the lung cancer community. He is also a brilliant strategist who listens, thinks, and is not afraid to say what needs to be said.
Advocacy is relational work, and requires candid conversations. One thing we often hear is that lung cancer is the deadliest cancer, yet receives very little funding for research.
I’m a “glass is half full” kind of person who likes to focus on the positive and express a lot of gratitude. Effective advocacy requires an honest assessment of the problem. I’ll be honest with you: I’ve found it hard to speak or write publicly about one of the real problems with lung cancer research funding problems here in Canada.
If I may be open with you, for some time I’ve been aware that one of the big roadblocks to lung cancer research funding is a lack of invitations and obvious ways to donate. There aren’t foundations filled with people trying to raise money for lung cancer research. It’s rare to even find a link on a website to click on. Last year I asked the Ottawa Regional Cancer Foundation to put a link on their website to receive donations throughout Lung Cancer Awareness Month, and they did, which was wonderful, but it was only there for one month. Through my lung cancer journey, my experience is that it has generally been challenging to find a way to give specifically to lung cancer research.
It’s easy to donate to cancer in general, or to some other specific cancers, but the world’s biggest cancer killer? Very challenging here in Canada. This is a serious problem.
Lung cancer patients and advocates want more life-extending research (including clinical trials); researchers want more money. Lots of people care and are willing to give. I wonder how many have not yet given because no one asked them to give, or because they could not find a straightforward way to give.
If we want people to give to lung cancer research, we need to invite them, and also create clear pathways for them to give.
I am passionate about this because research is extending the lives of so many people affected by lung cancer, and we need more research! We have been working behind the scenes to help open pathways for giving directly to lung cancer research here in Canada.
Research matters! More research means more survivors. Lung cancer research is cutting edge, exciting, life changing! We need to tell the stories and raise more funds for much needed research so that more people affected by lung cancer will be able to live better and longer.
Today is my six year cancer-versary. Look for exciting news about how we will celebrate!
Through the Valley 