A quick update to let you know I’m doing well, and I hope you are too. I’m enjoying this beautiful summer, spending some time with friends, doing lots of jobs around the house, and loads of lung cancer advocacy.
Very thankful that the chemo is working. Twelve rounds since November 2020, and I’m feeling well, better every round. So very thankful, and holding onto hope.
If you’re facing chemotherapy and feeling nervous, be assured that chemo today is not like it used to be, not like the movies have portrayed it. Many people never lose their hair, and there are great new drugs to deal with nausea. It’s much more effective now, and much less toxic. Cheers to researchers! #ResearchMatters
Cheers to everyone who has ever gone through chemo, or supported someone going through chemo. #SupportMatters Being on chemo can be a mental / emotional battle as well as a physical one. It makes a real difference to receive kindness and care. We all need support and encouragement.
A big shoutout to my great care team, including the nurse who found a vein on the first poke today. That’s always good! My oncologist is kind, humble, wise, hard-working, and a great oncologist. So much to be thankful for.
Shout outs go to researchers and all who work to make the world a better place for people who are affected by cancer, whether it’s awareness, early detection, biomarker testing, treatment, research, survivorship…
Sending love out to all who care about and support me. It means so much. Thank you.
Last June I asked a really lovely medical oncologist/researcher friend, Dr. Narjust Duma, if she knew the YouTuber @chubbyemu. I was thinking that my son would really like it if @chubbyemu reached out to him. COVID was turning everyone’s world upside down, and I knew my son was a big fan, so I hoped it might help make his world a little better. Turns out she didn’t know him, but chose to reach out on our behalf anyway, and @chubbyemu said he would be happy to connect with my son. I got all teary when I read her message, and I’m feeling the emotions again as I reflect on it now. So very grateful!
@chubbyemu emailed my son, and my son was thrilled. I was very excited too, and messaged @chubbyemu to thank him. I also mentioned that if he ever needed a lung cancer advocate, he could reach out.
What an exciting experience that was, especially since we were filming it separately in different countries, and Dr. Bernard was masterminding the production and helping me navigate various technical challenges at a distance!
Naturally, The White Ribbon Project was part of the 25 minute interview, and we were honoured to send Dr. Bernard (aka @chubbyemu) a White Ribbon, with sincere thanks for his support of people affected by lung cancer and The White Ribbon Project.
It’s so important that people affected by lung cancer know that they are not alone, they are loved, they are welcomed, they belong, you are loved, you are not alone. If you or someone you know would like a White Ribbon, please reach out. The White Ribbon Project is about #love and #hope.
It also matters that we recognize The White Ribbon Project is inclusive, including lung cancer doctors, nurses, researchers, fundraisers, administrators, physiotherapists, social workers, technicians, cancer centre CEO’s, media, newly diagnosed, care givers, people who have lost a loved one, survivors, former smokers, current smokers, never smokers, early stage, late stage, surgeons, radiation oncologists, medical oncologists, pharmacists, cancer centre staff, managers, social workers, respirologists, primary care physicians, health educators, friends, family members, speech-language pathologists, YouTubers, bloggers, and so many more! #inclusive
Thank you, Heidi and Pierre, for making the first Ribbon with love, making this particular Ribbon with love, and sending it with love to Dr. Bernard.
Thank you, Dr. Bernard for supporting The White Ribbon Project, this lung cancer survivor advocate, and so many other people affected by lung cancer. Thank you for raising lung cancer awareness. Thank you for your compassion, generosity, and kindness. Thanks also for the great photo’s! #thewhiteribbonproject
Thank you, Dr. Narjust Duma for choosing to reach out to a stranger to do a great kindness for the son of a lung cancer advocate. Thank you for being a fierce thoracic oncologist, Asst. Prof, researcher and advocate! Thank you for supporting people affected by lung cancer and The White Ribbon Project. We are grateful!
A huge thank you to all you wonderful people who wrote letters, called and/or emailed for people with ROS1 to get access to Crizotinib. I asked you in a blog post on September 13, 2020, to write officials requesting for Crizotinib to be added to the formulary for people with ROS1 lung cancer. I heard from over 30 of you who took the time to help save lives. Thank you! Together with all the other people who communicated, our voices were heard and Crizotinib was approved! Together we make a difference!
This is wonderful news for so many people, including B. who dropped by to chat and pick up two The White Ribbon Project ribbons today. She was diagnosed fairly recently with ROS1 lung cancer and is taking Crizotinib. She’s a lovely person with a family and strong support community who love her. It meant so much to give her two ribbons with love: one for her and one for her to give to a supportive friend.
Thank you to Bill and Lisa Weir, Canadians who make each ribbon with love and give each ribbon with love. Following the lead of Heidi Nafman Onda and Pierre Onda , making and giving ribbons with love. Thank you Lisa Weir and Bill Weir for working with care, ensuring that each ribbon is exactly like the originals. Same measurements, same materials, same fonts, same stickers. Strength in uniformity. Love in every single detail. #thewhiteribbonproject bringing people together, reminding us we’re not alone. #love#team
You may already know I had a very rough time healthwise in the Fall of 2020. We added radiation to the targeted therapy drug with hope that this one-two punch would knock out the progression I was facing, but sadly it didn’t do the job. I got pneumonia, suffered more progression, started chemo then got pneumonia again. It was a difficult time, and it became hard to keep up with walking the (large) dog twice a day. I was very weak and tired, could not swallow hardly anything, and had no appetite.
I’m so happy to say that I’m doing much better now. I continue to feel a little better each day, and am very grateful! I haven’t had any further swallowing appointments or procedures, but gradually I’m able to swallow a slightly increasing range of soft foods. The chemo is definitely working to kill the cancer, and it’s not too hard on me.
I seem to have settled into a rhythm each three week chemo cycle, and the side effects seem to be getting more manageable. Every three weeks I have about five rough days, when I feel extremely tired and experience side effects like nausea, general unwellness and a rash.
We are given a prescription for pills to counteract the nausea, to be taken as needed. I’ve used them a few times, but generally find that the anti-seasickness bracelets (that I also used to reduce morning sickness during my pregnancies) take the edge off enough for me to manage. Combine that with eating frequent small meals, and I feel quite well. The nausea only hits for a few days out of a three week cycle.
I’ve worked at being proactive, preparing for the phases of the cycle as best as I can. I take steroids for three days around the day when I get chemo, to help keep my body from reacting too strongly to the chemo. The rough days are largely a reaction to stopping the steroids. I make sure to plan to eat well and keep hydrated. I prepare foods in advance that will entice me to eat when I’m struggling from loss of appetite. I greatly reduce my expectations about what I’ll be able to accomplish those days, though I do find light exercise and phone calls with friends energizing.
I’ve been using aloe vera to help with the rash, and last cycle I applied it preemptively, before I had any rash symptoms, and did not get much of a rash at all! My skin was only a little pink, and not hardly itchy! Now the nerd in me is thinking we should do research on this, dividing patients into randomized trial groups to see if it was the aloe vera that worked, or merely gradual lessening of side effects, which is common as the body adjusts to a new treatment. I’m so curious, but I don’t want to experience the itchy rash again so I plan to apply it preemptively again next time!
We’ve been the recipients of so much generosity and kindness. What a difference that makes! Thank you so much to all who have brought or sent flowers, food, masks, food, prayers, food, lovely cards, kind thoughts and words, or food. We have been strengthened and uplifted with the love and support of so many. Thank you! So much gratitude!
I’ve also had the great gift of getting several sheets of exercises from two different oncology physiotherapists to help improve breathing and some trouble with my neck / shoulder region. I’m grateful to be seeing some improvement. It’s hard to know how much is the multiple sheets of exercises that I do every day, and how much is the cancer mercifully shrinking away. Either way, so very grateful.
I’ve been very busy with lung cancer advocacy, like the ongoing work as patient representative for the Canadian Cancer Trials Group Lung Site, 3CTN, The Ottawa Hospital, International Lung Cancer Foundation, and new connections with research teams in other cities. There is so much to tell you about how The White Ribbon Project is growing, and how people have stood up to raise awareness and proudly represent in eight Canadian provinces already! So exciting! Also continuing this month I’m part of a team exploring how to accelerate new drug approvals for people with lung cancer, and continuing conversations with a YouTuber who wants to help raise awareness about lung cancer. There is so much important work to do. It takes a team!
I’m so very grateful for lung cancer research that is helping to keep so many lung cancer survivors alive so we can do the things that matter to us.
More research means more survivors.
Research is life.
I really want to make sure you know I’m alive and quite well, doing a little better every day, and oh so very grateful.
The International Association for the Study of Lung Cancer holds the World Conference on Lung Cancer every year. This beautiful picture was taken at WCLC19 in Barcelona. COVID has not stopped lung cancer research, but due to COVID-19 WCLC20 has been happening this month, virtually rather than in Singapore. I’m going to briefly summarize two key presentations below. (After I tell you about these amazing smiling people below)
I love looking at these amazing advocates from several continents, gathered in Barcelona in September 2019 to learn and celebrate research. We know that research means life, and lung cancer research is extending many of our lives. Many of us are now taking treatments that did not exist when we were diagnosed. Some of us are holding onto hope for new research to come up with an effective new treatment to help keep us alive before our current treatment stops working.
At the time of that photo, nine of us were on treatment (later stage diagnosis), two diagnosed early stage (had curative treatment), three never diagnosed, and all fourteen fierce lung cancer advocates. I’m grateful that though some of us have gone through very bumpy paths, all are still alive. How happy we are that we were well enough to travel to Barcelona and be physically present together with top researchers in the world, learning the newest potentially life-extending news!
For people affected by lung cancer, research often means the difference between life and death. For those of us who know many people affected by lung cancer, losing people we care about is far too common. Most of us are diagnosed at a later stage with a very poor prognosis. If more people were diagnosed at an earlier stage, way more would live much longer.
Lung cancer screening works, and more doctors need to know it.
When we test people using low-dose CT scans, way more will be cured. Lung cancer screening has the power to shift the stage when the majority of people tend to be diagnosed from late stage to early stage, which makes a huge difference for survival. In very broad strokes, when we don’t screen, about 3/4 of the people will be diagnosed later stage (with very poor prognosis). When we screen, about 3/4 of the people who are diagnosed will be early stage with a very good chance of living long and not dying of lung cancer.
Lung cancer screening makes sense!
Second, a new study from Taiwan (“TALENT”) shows the importance of lung cancer screening for ALL high risk individuals. Most screening is done for people with a long history of heavy smoking. These researchers from Taiwan did lung cancer screening for people who had never smoked but were at high risk from other things like family history or cooking without ventilation. They found lung cancer in a larger percentage of people than is typically found in a screening study with heavy smokers. This “TALENT” study found lung cancer earlier and people will live much longer because of that.
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.
Lung cancer advocacy offers a world of opportunity! A variety of sizes and shapes so that everyone who wants to stand up for people affected by lung cancer can find ways to apply best practices to make a difference!
Let me give you a small taste by telling you about my day yesterday, and some of the terrific teams I get to work with …
International Health Advocate Chris Draft called from Atlanta yesterday morning. Great call: inspiring and energising! Team Draft invests in lung cancer advocates: supporting, training, encouraging. Chris is a strategic big picture thinker, always challenging people and organizations to leverage opportunities to do even more good for people affected by lung cancer. #Grateful
A team from The Ottawa Hospital Cancer Centre is working on a resource package that will go out (on paper and electronically) to people who are newly diagnosed with lung cancer. This project matters because it helps fill a gap in patient care. We are a diverse team, representing all key groups: administrators, nurses, psychosocial oncology, doctors, and survivors. This diversity is important to ensure that the package will be as effective as possible, and that it will actually get to people. I spent some of yesterday working on the letter from survivors that is part of the package.
What happens after lung cancer researchers apply for funding? A team of reviewers invest many hours carefully reading their research proposals, discerning strengths and weaknesses and evaluating, then gathering to discuss which they will recommend to receive funding. I spent time yesterday reading a research proposal as part of a review process.
The Patient Representatives Team of the Canadian Cancer Trials Group (CCTG) met (online) yesterday, so (among other things) I got to hear research updates from some amazing people, and present what’s happening with the lung site. Clinical trials are getting back on track after some things had slowed down due to COVID. Good news! Research matters!
The Canadian Cancer Research Alliance is supporting a project to gather recommendations for cancer research. I applied and was honoured and humbled to join the team. We were each asked to submit our five key Canadian cancer research priorities. What cancer research do you think is most important for the coming years? Yesterday the Ontario team met to discuss the priorities we had submitted, and worked together to discern the most important. Other regional teams will be meeting in days to come, and the rest of the process will unfold. What a tremendous opportunity to together influence Canadian cancer research priorities! Our voices matter.
There is a new CCTG lung cancer research idea that has been worked on and debated about for months. I’m excited about it, and have spoken up for it in CCTG Lung Executive meetings. Yesterday another CCTG patient representative and I agreed to be involved as collaborators on the grant application. Research brings hope!
There are many opportunities for lung cancer advocacy. We need more people to step up and be part of the team! I enjoy investing a lot of time and energy, but you don’t have to do the same things I do. There are a wide variety of opportunities to make a real difference! We need people with different skill sets to bring their unique abilities and commit whatever amount of time they choose. It’s up to us. Advocacy matters! #Team
Every day I give thanks for terrific teams and advocates, and that I’m well and able to do this work. Please don’t hesitate to reach out if you have questions or comments. #ResearchMatters #Hope #Gratitude
I’m alive because I take daily cancer-fighting pills. Would you give 10 minutes to help people live? Please send an email asking for funding for a lung cancer pill. I put the email I sent below for an example, so it’s very fast & easy for you to cut and paste it and make it your own. Details below!
Let me tell you about my friend Patty Watkins. In 2014, Patty was in excellent shape. Her son’s graduation was just around the corner and she was looking forward to it. One day she experienced a burning feeling in her leg, so went in to get it checked. She awoke after surgery to learn that she had lung cancer and only a couple of days to live. “You’ll never take Patty home,” the doctor told her husband. They called their children to come so they could say their goodbyes.
Patty was determined to live long enough to attend her son’s graduation. Biomarker testing revealed that Patty had ROS1, a rare kind of lung cancer which is treatable with a pill called Crizotinib.
That turned Patty’s story completely around! Patty is alive today because she takes daily cancer-fighting pills!
Patty lives every day. She is a powerhouse! Here are some of the things she has done while on Crizotinib…
Patty rode a camel, was baptised in the River Jordan, floated in the Dead Sea, went to Paris (and when her hotel was under siege during the Paris attacks, she crawled to the hotel basement on her belly!), saw her daughter marry, celebrated her & her best friend’s 60th with a White House tour, and walked many 5K’s for lung cancer research!
Patty rappelled down a 20 story building to raise money for research! Way to go, Patty!
All this because she was tested, and treated for ROS1 lung cancer with Crizotinib! Patty Watkins is alive and well today thanks to Crizotinib! She’s also now a grandmother, and loves spending time with her cute grandson!
In many places, doctors don’t test for ROS1 lung cancer, so people are dying not even knowing there are pills they can take to fight their cancer. People don’t always get the opportunity to live like Patty does.
In Canada, some hospitals test for ROS1 and some don’t. Some provinces fund Crizotinib and some don’t. We are working for change!
Right now, I’m asking for your help to get our province (Ontario) to listen and start funding Crizotinib for people who have ROS1 lung cancer. Would you please support this important work through social media, and/or sending an email. Below, for an example, is the email I sent. Feel free to adapt it to suit you. You don’t have to live in Ontario to help, but if you do live in Ontario, please mention where you live, and if you are emailing your MPP, please indicate they are your MPP and include your address.
This is a grass roots movement supported by some people with ROS1 lung cancer (including Christine Wu), other advocates (including MaryAnn Bradley and Andrea Redway), and Lung Cancer Canada. LCC and several oncologists have sent a request letter, the link is in the email below. Together our voices amplify this message, and will help people get cancer-fighting pills to help them live longer and better, like Patty.
Dear Hon. Christine Elliott, Minister of Health,
I am a lung cancer survivor who lives in Ottawa and is treated at The Ottawa Hospital. I would like to request a meeting to discuss the funding of Crizotinib for ROS 1 lung cancer patients and survivors in Ontario.
I was diagnosed with stage 4 lung cancer in 2013, and I know first hand the difference Crizotinib can make. After chemotherapy, Crizotinib offered much better quality of life along with the freedom to take it at home. Crizotinib kept me alive long enough for other treatments to become available which have kept me alive to experience milestones like my three children all becoming teenagers, and my eldest starting University.
It matters to me that all others who could benefit from Crizotinib be given the opportunity to live longer and better.
Crizotinib for ROS 1 received NOC November 2017
It received a positive PCODR recommendation June 7 2019.
The PCPA (pricing) negotiations are complete.
Provinces across the country have started to cover it including BC, SK, QB, NL, NB.
It fits in with provincial pandemic plans (including ONTARIO) to keep patients out of hospital as it is an oral take home medication.
This drug is vitally needed as a treatment for ROS1 positive lung cancer patients. Here is a link to a letter from Lung Cancer Canada written in June 2020 to Angie Wong, which outlines the case for funding. To date, there has been no response.
Please send an email to the Ontario Minister of Health, the Honourable Christine Elliott email@example.com, and also cc me firstname.lastname@example.org.
Please don’t hesitate to reach out if you have any questions, concerns or comments.
I addressed this email to the Minister of Health, and cc’d in France Gélinas, (NDP Health Critic), John Fraser (Liberal Health Critic), Karen Hughes (Deputy Minister), and Robin Martin (Parliamentary Assistant). I also sent personalised emails to several others, including my own Member of Provincial Parliament. (Email addresses: email@example.com firstname.lastname@example.org email@example.com firstname.lastname@example.org)
THANK YOU SO MUCH!!! I am very grateful that you are doing this! I love Patty and others with ROS1 lung cancer, and I very much want all to live longer and better with Crizotinib. Your participation means a great deal.
A pill can turn a life around. Thank you for acting to turn people’s lives around.
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.