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!
#12Days of giving to #lungcancer #clinicaltrials #Hope #Care #Team #Support #SilverLinings #Stories #Awareness #Early Detection #Treatment #Research #Survivorship #ThankYou
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!
An encouraging email from a dear friend this morning reminded me that if you don’t follow me on facebook, you may not know how grateful I am for your generous flow of donations which filled my LUNGevity Summit Survivor Challenge account all the way to the top and even a little bit over! I am excited to be going to LUNGevity Foundation’s International Lung Cancer Survivorship Conference in Washington, DC, April 26-28!! THANK YOU!!!
I am grateful to be blessed in so many ways, and one of the biggest gifts is my community, my circle of friends who hold me with such love. Thank you for being part of that community. I have no words for how grateful I am for you.
Yesterday my husband bumped into a teacher from back in our eldest’s elementary school days. She told him she follows this blog and prays for me every night. When he told me, I got a little teary with gratitude. I can’t tell you how many times people have said they read this blog and think of me and/or pray for me regularly. Thank you! You are making a difference!
You help me have hope! Thank you!
As my dear friend said in her email, I have opportunity to share amazing hope… here in Ottawa, in Atlanta the end of this month, at the LUNGevity conference in April, and who knows where else! Thank you for the ways you help me open up the doors!
LUNGevity’s summits have made a huge difference for me. I’ve deeply connected with my lung cancer family, my silver linings. I’ve learned about new research, and my hope has grown tremendously.
Being at this conference has been incredibly inspiring, and I would love to go again this year. I want to be there to represent Canada, and be a supportive presence for all who are there. I also want to get a booster shot of hope and bring back news of exciting research and great stories to share with Canadians (and others) affected by lung cancer. I know I’d come back a better advocate.
If I can raise $1500 or more in donations, LUNGevity will cover my travel expenses, including airfare and hotel accommodations.
Many of you were so generous for the Super Bowl Challenge, and I’m thankful! I wouldn’t want anyone to feel pressure, but if you’re able to help me get to this year’s summit, I’d be grateful.
LUNGevity earned a 4-star rating (the highest rating) from Charity Navigator again this year. You can read more about that here.
Two of my Ottawa lung cancer sisters are coming to the summit this year, maybe more! Others are coming from elsewhere in Canada. It would be strategic, and so good to spend time with them!
LUNGevity’s summits have been getting growing numbers of people affected by lung cancer from around the world, so this year it’s “The International Lung Cancer Survivorship Conference”. I’m going to represent Canada and I look forward to spending time there with some of the Canadian lung cancer advocates that I try to encourage regularly.
Proceeds from this fundraiser will benefit LUNGevity Foundation, the leading private provider of research funding for lung cancer. LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.
I’m so grateful that I could join about 200 Lung Cancer survivors and 170 caregivers at LUNGevity’s Hope Summit in Washington DC the end of April!
I arrived to cherry blossoms on Thursday afternoon and enjoyed a quick view of some of the monuments and museums from the Circulator Bus. I spent time in the National Museum of African American History & Culture. I’m grateful for the few hours I got to play tourist, the many steps I walked (about three times my usual), and the healthy food I was able to buy from a grocery store. I went to my room early and slept well in preparation for the packed schedule the next three days!
National Museum of African American History & Culture, close up. “His Eye is on the Sparrow…”
National Museum of African American History & Culture, from near the Washington Monument
Friday was a special Advocates day, then a welcome reception to kick off the week-end. We listened to speakers, met amazing new friends and reconnected with dear folks who feel like family!
So much to learn!
So much to learn!
So much exciting new research! So much joy and love, tears and hugs. So much hope!
Jill & Jill # This Is Hope
I came home refreshed and renewed, encouraged and energized! I came home with inspiration, instruction and ideas! I came home with deep gratitude for the people who make this Hope Summit what it is: organizers, speakers, participants, and generous supporters like many of you!
Thank you for helping me go! Thank you! Thank you! Thank you!
Linnea has the same type of LC as I do, and is celebrating 13 years of living life since diagnosis!
Canadians are loved, welcomed, and (this year) honoured with a special ribbon on our name tags. (I chose the purple one for fun!)
Two of us came from Ottawa! So exciting! 🙂
Five Canadians participated this year! Four of us are pictured here with LUNGevity’s inimitable Katie Brown! How many Canadians will go in 2019?
Having “the conversation” with people you love is one of the hardest things after a cancer diagnosis. Three and a half years later, I clearly recall some details of those painful conversations when I told my friends or family that I had cancer – serious cancer.
The anticipation was horrible. The conversations were difficult, but there were many moments of love and generosity outpoured, both during the conversation as well as afterwards. So much grace that I had not anticipated!
I remember telling my small group. Our group has met weekly for several years to study the Bible and pray together. We had grown to love and trust each other, and these were friends I knew I could lean on. I knew they would be there for me, but I had no idea how much.
“You’re not alone.” The first words I remember hearing from my small group when I told them my sad news. Many more words of love, support and solidarity have followed, but these words echo out across the years. These words echo when my friends pass the tissues and cry with me, when they gather around and pray for me, when they bring me food and organize an army of beautifully generous meal preparers, when they get on hands and knees to clean my house, when they sit with me and listen, when they take my kids out for treats and listen, when they have our family over for an evening of fun, …
It’s not good to be alone. We need each other. We need people to laugh with and cry with. We were made for community.
The gifts that I have received in vulnerable times mean so much, and I am grateful beyond words for the goodness that friends, acquaintances, and even strangers have poured out over us since my diagnosis. God’s presence, faithful love and abundance is always with us – so many passages of Scripture remind us! We have felt embraced by love and generosity … never alone!
Another good gift I have received is the community of lung cancer patients and caregivers. People who’ve had similar conversations with their family and friends. People whose conversations have not always gone well.
I’m grateful for so many of these fine folks I’ve been privileged to get to know online through patient forums. These groups are a good source of support and information for me. I’ve grown to love these people and to think of them as my tribe!
And recently I got to meet some in person through LUNGevity’s Hope Summit in Washington DC.
I left Ottawa one cold and foggy morning in April and arrived in a completely different climate zone. Spring had sprung in DC. I had already missed the cherry blossom festival, but there remained much beauty to behold!
Roses in Rosslyn
Wisteria in Washington
The Patients’ & Caregivers’ Summits began on Friday night, with an Advocates meeting for a number of us keeners on Friday. I arrived on Thursday morning with the whole day stretched out before me. I hadn’t ever met anyone from LUNGevity before, and I was a bit nervous about being there all by myself. I checked into the hotel, right by the beautiful Key Bridge (which crosses the Potomac from Rosslyn Virginia into Georgetown). I was just about to head out the door to find my way to some of the Monuments and Museums in DC, but got distracted by people arriving in the lobby.
View of the beautiful Key Bridge & Georgetown from the top floor of the hotel
I couldn’t help but overhear one of the conversations … it sounded vaguely like it could be between two LUNGevity friends who hadn’t seen each other since last year’s Patient Summit! I approached and asked if by any chance they were part of LUNGevity, and that is how I met my first two LUNGevity friends, Ivy and Don! They were so friendly and invited me to join them and others for a walk across the Key Bridge to Georgetown for lunch! It was pretty easy to choose getting to know them over sight-seeing!
I never did make it to any museums or monuments, but I have no regrets! I was privileged to spend a lot of time meeting new friends and walking back and forth multiple times across that bridge! No one was left behind … not even people with diminished lung capacity! 😉
I learned more about advocacy and what it means to be an advocate or an activist. Thought-provoking! So many good conversations both as part of the summit and in the unscheduled moments!
Chris Draft of the Draft Family Foundation: Inspiring Advocate!
So many exciting new advances in Lung Cancer treatments! So many resources! So much reason for hope!
One of the presenters was Dr. Ross Camidge, a well-known expert in my particular type of lung cancer. Late Saturday afternoon I sat beside him at an “Ask the Expert” table discussion. So many questions I could have asked him, but my brain was chock-full of information so we mostly chatted about cross-cultural differences (he’s from the UK and works at the University of Colorado Cancer Center), and he told me funny stories! 🙂
I came away encouraged and inspired! I came home with ideas and direction! I’m so grateful for all the LUNGevity folks who welcomed me, and for the anonymous donor who made it possible for me to be there. Thank you!
But mostly I came away with a strong sense that I am not alone! There are so many others walking similar paths, and I am grateful for the opportunity to get to know some more of my tribe! I’m grateful to be able to walk across that beautiful bridge! I’m grateful to have met these beautiful people who are walking a similar journey to me – patients and caregivers and others who support and advocate powerfully!
I hope to tell you more in future posts. There is always so much to say! 🙂
Here’s some exciting news about next week: I’m participating in a webinar for Cancer Coaches on Monday afternoon, speaking about my clinical trial experience. This is my first webinar, and I’m grateful for this opportunity! Cancer coaches are a real gift, and they can help you with difficult conversations!