Thank you for supporting Team Jill in the Super Bowl Challenge! Together we raised over $1000., whether you count in Canadian or American dollars! That is over $1000 that would not have been raised if Team Jill hadn’t taken action to raise lung cancer funds, and if some of you hadn’t taken action to give them. Thank you! Thank you also for your many encouraging words of support, the “likes”, retweets, shares, etc. This kind of support matters too! While writing this, another person gave $50. Thank you!
All together so far, the Super Bowl Challenge has raised over $77,000 USD. That is money that might not otherwise be raised for lung cancer. The SBC has ended, but you can still give until Feb. 3rd. Thank you Chris Draft and Team Draft for the work you put in to make the Super Bowl Challenge happen this year. What a great opportunity for cancer centres and other charities to raise funds and get huge publicity for the important work they are doing!
As the year-end draws near, I’m thankful for life and meds that help keep me healthy, thankful for all I was able to accomplish this past year. A lot of the work I’m doing is new for lung cancer. For example, I’m the first Canadian Cancer Trials Group lung site patient representative who has been affected by lung cancer. Before my oncologist asked me to sign up, Carol had been kindly representing lung cancer patients, even though her cancer experience was a different kind of cancer. We owe a debt of gratitude for the good lung cancer work being done by people not affected by it. Much lung cancer work has been left undone. Many groups are only starting to wrestle with how to include the patient voice. Some are not yet convinced of its value. Being the first in new territory is harder, like carving a path in the jungle. (My University degree in Engineering where I was sometimes the only woman in classes of a few hundred men, and summer work where there was no women’s washroom, helped prepare me for this, along with summer work tree planting and working as a surveyor – not in a jungle, but in all kinds of terrain in the Ottawa region.) I work, not just to do the work, but also to carve paths to (hopefully!) make it easier for others who will come after me.
There are a few interesting projects in the works, which may be announced soon. I’m also sharing my story at my hospital in January, and continuing with my usual volunteering as patient representative for the Canadian Cancer Trials Group, The International Lung Cancer Foundation, and at The Ottawa Hospital. Our monthly support group and outreach tables at the Cancer Centre will be ongoing as usual. Too many to list them all!
Here’s a great opportunity for anyone affected by lung cancer in the Ottawa area. Back in November, Dr. Dugald Seely, Founder and Director, Ottawa Integrative Cancer Centre and Prof at uOttawa, set up a meeting with Andrea Redway and me. He wanted input from people with lung cancer experience as his team worked on developing a program for people affected by lung cancer. (He had also spoken at our summit in November.) So nice when others take the initiative for lung cancer. The free program starts January 23, and runs Thursday afternoons. Here’s the link for info and registration. Thank you, Dugald and OICC!
As 2019 draws to a close and we make the most of each last day that we are given of this decade, I have been doing a lot of reflecting. I may share some of it with you, but in case I don’t blog again before January, Happy New Year to you and yours! May the next decade be filled with love, joy, peace and thankfulness.
HUGE THANK YOU to all who have given so far in our 12 Days of Giving to Lung Cancer Clinical Trials!!
THANK YOU for giving to lung cancer clinical trials!!! You are making a difference for people now and into the future! It takes a team to tackle lung cancer. Thank you #team!
Your gift will help people living with lung cancer experience longer and better survivorship, and it will contribute to the eradication of lung cancer. That means so much. Thank you.
Huge thank you to Team Draft and Chris Draft for your hard work putting on the Super Bowl Challenge, developing leaders and supporting people affected by lung cancer around the world. You make a real difference. Today marks eight years since Keasha Draft’s passing. Chris, you have put in far more work than we realize and you deserve far more appreciation than we show. THANK YOU.
Sunday the 29th is the last day to give to the Super Bowl Challenge, but we will continue to accept donations for clinical trials into January. I’ll be honest with you. I would LOVE to win the Super Bowl Challenge, earn a trip to Florida in the Winter, the experience of a lifetime and opportunity to share lung cancer’s story with that huge platform … but …
What really matters is that we pull together as a team to tackle lung cancer. What matters is that we rally together for better care for people affected by lung cancer. Clinical trials matter because they actually extend lives.
Anyone can get lung cancer. I am frequently contacted by people shocked and saddened by a diagnosis, whether their own or someone they love. Lung cancer affects almost everyone.
Research is changing the story & saving lives, so we need more research! I have a deep passion for driving change in this field and sadness that so far we have raised less than $1000.
It’s not too late to raise more money for lung cancer research!
It takes a #team to tackle lung cancer. Join us!
Would you please consider giving if you haven’t yet? Would you have family or friends who you might ask to give to this important cause? Please invite them. This is a good year end tax deductible investment. It could extend your own life or the life of someone you love.
It’s not too late to give to lung cancer clinical trials. Please give, #team!
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!
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.
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!