I won’t lie. This past month has been a challenging season, due to pain, nausea, fatigue and breathing challenges. Living with cancer can be very challenging, but thankfully the pain, nausea and fatigue are improving. I’ve had to hunker down and rest a lot, but am thankful to still be able to spend a little time with people, get some exercise and continue to do some advocacy work. We don’t get to choose all of our life circumstances, but we often get choice in how we respond. We can control the things we can control. Choosing to give thanks even in the midst of challenges can be a real game changer.
The upper endoscopy which happened the end of September (mentioned in the previous post) went well. We learned that my esophagus (food pipe) had narrowed to the size of a pin prick. No wonder swallowing was so challenging! The next day the phone rang with an appointment for a stent to be inserted in my esophagus the day after. A stent is a flexible tube to help keep the esophagus open to make it easier to swallow food and drink. I was very thankful for the opportunity to take advantage of a cancellation and get this taken care of quickly. That procedure was harder on me than I anticipated, and I slept for some time in the hospital afterwards. I’m thankful for Jackie Manthorne, President and CEO of Canadian Cancer Survivors Network (pictured below) who waited patiently, helped get my prescription meds and got me home safe and sound. So many people have supported by driving to and/or from appointments. What a good gift! Because this time was such short notice I put a request out on facebook, and had multiple offers within a few minutes. Thanks also to Robyn Denis who drove me to the appointment. So many have offered and have driven, and you have no idea how much it means. Thank you!
Awesome advocate Jackie September 2022Awesome advocate Robyn 2021Awesome advocates: Robyn’s daughter Elizabeth with Dr. Paul Wheatley-Price. Photo credit: awesome advocate Chris DraftKim Andrea and Robyn – awesome advocates. Photo credit: Chris Draft 2019
I’m very grateful that swallowing is so much easier than it was in September. In addition to liquids and puréed foods, I can carefully chew and swallow soft foods. This helped make (Canadian) Thanksgiving Dinner much more enjoyable. Very thankful for my middle child and her boyfriend who cooked a delicious vegan dinner for us. There was tons of food, mostly on the kitchen counter since it would not all fit on the table. I still eat very small portion sizes, and could not finish all the yummy veggies on my plate that evening.
Canadian Thanksgiving 2022Canadian Thanksgiving 2022
I’m also incredibly thankful for the gorgeous weather we’ve enjoyed this Fall. I went out walking as much as I could, often with my youngest who I’m so grateful for, and our big sweet dog. Here is some of the beauty we’ve been able to enjoy this past month.
Today I’m especially thankful for two dear friends who popped by this afternoon. We are blessed with so many good people who generously support us. Love and support can make a world of difference, especially during the challenging seasons, and I can’t tell you how much that means.
Could I challenge you to choose a friend or neighbour to reach out to with love and support in the next few weeks? This does not need to be someone affected by cancer, but could be someone going through a difficult season. Please never underestimate the difference you can make for someone!
November is Lung Cancer Awareness Month! What is your Cancer Centre doing to celebrate survivors and raise awareness?
August 2021Awesome advocate Catherine 2021August 2021Awesome Bill Weir Photo credit: Chris Draft 2022Awesome Lisa Weir Photo credit: Chris Draft 2022Photo credit: Awesome Chris Draft 2022Awesome advocates at ribbon build in honour of the awesome advocate Brigitte, 2022Awesome advocates at ribbon build in honour of the awesome advocate Brigitte, September 2022Ribbon build in honour of Brigitte. Photo credit: Chris Draft September 2022Photo credit: Chris Draft September 2022Photo credit: Chris Draft September 2022
I’m excited to share this recipe with you because this has been my favourite smoothie for many years. When swallowing was challenging in the winter of 2020-21, I was not even able to swallow this smoothie. I did some tests, then some exercises given by Emilie (pictured below), a lovely Speech-Language Pathologist. (Those who are interested can read more here: https://throughthevalley.ca/2021/01/20/health-and-advocacy-update/.) Swallowing improved and has been good ever since. For some time I’ve been able to eat just about everything. I still really enjoy this smoothie and want to share the recipe with you. Thankful!
We can go through times when it’s hard and we can start imagining that things will only get worse, but that’s not necessarily true. We can ask for help. Things can turn around. We can choose hope and hold onto hope!
Jill’s Hope Mango Smoothie Recipe
Approximately 1/4-1/3 cup of mango
3-4 celery stalks, chopped
1 Tablespoon peanut butter
1 scoop plain protein powder (unsweetened, unflavoured)
Milk to fill it to the max level
Blend it all together and enjoy!
Keep holding onto hope!
What is your cancer centre doing for World Lung Cancer Day August 1?
Happy Cancer Survivors Day! Cancer affects so many of us, whether directly or indirectly, and it’s exciting that right now the biggest cancer conference in the world (ASCO) is happening in Chicago and online because more research means more survivors and better survivorship.
There is much talk of new treatment options and potential cures, and I can’t tell you how thankful we are for research and all involved in the research process. Just over a week ago, terrific Canadian ribbon makers, Lisa and Bill Weir and awesome advocate Chris Draft and I were representing The White Ribbon Project, speaking to a group of the lung team members from a pharma company, communicating how thankful we are for the research they do, and how important research is to the lung cancer community. What a difference research makes! #ResearchMatters
This pharma company team did a terrific job all around. They were well-organized and effective communicators who sent a thoughtful and well-written thank you email afterwards including promises of ongoing partnerships. What a great day! The pharma company teammates made White Ribbons together with those three team members from The White Ribbon Project who were able to go in person and be at the same place to make ribbons together. I would have travelled there too had I been able, but instead very thankful that they effectively set things up so I could speak online.
Speaking of my health, I’m still on oxygen and we don’t know why there is still shortness of breath.
Dr. Nicholas, my oncologist, suggested it could be good to take a break from chemo to see how my body responds and also the cancer. Last week’s CT scan showed that the cancer remains stable or improved – great news! I still have shortness of breath, but most days am feeling much better, so that’s a real plus.
Dr. Nicholas has been working on discerning a good path forward. I may be able to participate in a clinical trial which may start in Toronto in the Fall, but there are still more hoops to jump through before this can happen. I’m very thankful for Dr. Nicholas who works very hard for his patients.
Celebrating cancer survival together with the awesome Andrea Redway on her seventh cancer-versary! Over fifteen years of survivorship (and two metres) between us!
Andrea (above) is also a patient of Dr. Nicholas. Here she is, celebrating her seventh “cancer-versary”, also on the same day as the ribbon build! When she was first diagnosed, the cancer had already spread through her body and she was very close to death. She and her husband advocated for her to get the life-extending surgery she needed, and a less experienced surgeon was willing to do it even when a more experienced one was not. Together with Dr. Nicholas, Andrea and Michael looked possible treatment options and talked about immunotherapy back in earlier days when it was not so common. He was quick to get the paperwork done and Andrea is alive and doing well seven years later. She is an amazing advocate and we are so very grateful for her and the good care she has received.
It matters to keep holding onto hope and continue advocating for more research and for advances in research to get to people who need them. Researchers are working hard to find cures. Research advocates have an important part to play, representing survivors, patients, their family, loved ones, and the public. It is important that we are trained and well educated so we act like professionals and work effectively.
Another meeting I got to be part of that same day was with the team that is working on Canadian Cancer Clinical Trial Network’s (3CTN) Precision Oncology Map that some of you may know about. Last Fall the Canadian Cancer Clinical Trials Group earned the Bayer Precision Oncology Patient Innovation Award grant of $25,000 and is using it to improve clinical trials for people living with cancer in Canada.
This team has been working to develop a map of all the Canadian cancer clinical trials so that patients, caregivers & clinicians can more easily find suitable trials and researchers & sponsors can search for gaps where more trials are needed. We are still looking for feedback on how user-friendly the current test version is, and if you are interested, you are welcome to help.
Below are some pictures from that awesome build mentioned above. Thank you to Lisa and Bill Weir (with the great tee shirts), Amy Hayes, Lorraine Hudson, Grace Oha, Lung Ambition Alliance, AstraZeneca and the awesome advocate and photographer, Chris Draft. Great day! Thanks also to Heidi and Pierre Onda, founders of The White Ribbon Project.
Bill and Lisa Weir, Lorraine Hudson, Amy Hayes, Grace Oha
It is with profound thankfulness for her life and advocacy, and with deep sadness we share that our dear friend and lung cancer sister, Brigitte Lavigne who is also known as B or Bee Thevine, passed last week. She and her dear friends and family have participated in lung cancer advocacy, including making ribbons as part of The White Ribbon Project and supported others of us affected by lung cancer. They have been awesome supporters and advocates. Brigitte was one of my big encouragers, and I know many other members of the lung cancer community would say the same. We are so very grateful to have known her, and to have connected with her community.
Brigitte loved Easter. Last Easter she gave me flowers and a card. She gave so much joy. She was a silver lining of lung cancer for very many of us.
Peacefully on Thursday, April 14,2022 surrounded by her family at the Ruddy Shenkman Hospice, Brigitte leaves behind her caring and supportive husband, Kyle, beautiful and courageous children, Kiera and Liam, wonderful brother, Ben, attentive sister-in-law Laura, lovely niece, Simone, loving parents, Michele and Ron, gracious parents-in-law, Brian and Janet, and thoughtful sister-in-law, Kathy.
Brigitte is ever so grateful to her strong community of friends, colleagues, and neighbours, who accompanied her and her family during these difficult times and throughout her life.
She will be missed by her strong and influential besties from Montreal, the poker princesses, University friends, the Bel-Air babes, her training partner and the girls from Toronto and PEI. These friends helped shape Brigitte in more ways than they could know.
Her amazing medical team was held in high regard. Compassionate and caring oncologist, Dr. Nicholas, kind and concerned respirologist, Dr. Graver, palliative care doctors, supportive family physician Dr. Bordeleau, home care nurses, specialists, hospice caregivers. Brigitte benefitted from specialized care at the Ottawa General Hospital Cancer Centre, the IGFCC, and was regularly seen at the Queensway-Carleton Hospital. She had nothing but positive words about the medical care she received and referred to them as her dream team.
A loyal public servant who dedicated her career to public safety, Brigitte enjoyed running, spending time outdoors, engaging with people in her community and being a mom. Her children were the centre of her universe.
Brigitte was supported by a strong network of lung cancer sisters whom she fondly spoke of as her sisterhood. She learned about advocacy and was actively involved in The White Ribbon Project, participated in cancer patient research, donated her cells to a cancer line project and was a member of the ROS1ders.
Brigitte was honoured by the ICAN International Cancer Advocacy Network through the Brigitte Lavigne Research Advocacy Program (Rare Resistance Mutations) to promote resistance research.
In lieu of flowers, please consider donating to the ROS1ders, Please clickHere or the Ottawa Race Weekend Team raising funds for Lung Cancer Canada in honour of Brigitte,Please click Here
A private gathering will be held for family. A Celebration of Brigitte’s Life will be held at a later date.
A Tree of Remembrance for Brigitte will be planted at the McAlpine Forever Forest, Vankleek Hill.
Funeral arrangements in care of Hillcrest Funeral Home Ltd., 151 Bond Street, Vankleek Hill, ON K0B 1R0 (866) 678-2002.
The picture above is from when I first met Brigitte in person and was privileged to give her White Ribbons with love. Right from the start she wanted more than one so she could also give Ribbons with love. This picture was taken before she was ready to publicly show her face or share her name, March 17, 2021.
Some of the pictures below are from our Ottawa Community Ribbon Build in August 2021, when Brigitte and her good friend, fellow advocate and The White Ribbon Project teammate Jesse, and her two children came to work on Ribbons. Brigitte loved all her people, but her children especially meant the world to her. We were so glad they could come to the build and we could meet them. It was great spending time with them and Jesse that day, as well as Brigitte. Brigitte gathered a community of amazing people, and spoke often of her family, friends and community. Other pictures are from a later date when Brigitte came over to put labels on and receive more Ribbons to give away. The day of the Ribbon build was so hot and humid that the ribbons showed no signs of drying anytime soon, so we had to be patient. It brought Brigitte so much joy to put on French labels. She knew that The White Ribbon Project is about love, that ribbons are given with love and received with love and that language matters. This was a good fit for Brigitte who was bilingual. She loved and advocated in more than two languages.
Brigitte activated a team who rose up doing advocacy. Even in this last month, Brigitte and her team did powerful work, delivering The White Ribbon Project Ribbons to our hospital and cancer centre in the west end of Ottawa, where she received much of her care, where I received my first rounds of chemotherapy back in 2013 and 2014. She participated in as many The White Ribbon Project community zoom calls as she was able, and yearned to be part of them when she wasn’t able. She and her team have made and will continue to make Ribbons. So far they have made 24 and 6 more are in process. They have given 20 of these ribbons with love, in addition to the several Brigitte was given by me. She also received a special honour with a named program that would focus on Research Advocacy on Novel Therapeutics for Resistance Mutations, i.e. a Brigitte Lavigne Research Advocacy Program (Resistance Mutations in Rare Cancers). She kept advocating until she could not any more, and she died knowing her community would step further into advocacy.
She powerfully loved people her whole life, and that did not change after her lung cancer diagnosis. A cherished member of our Ottawa Lung Cancer Support Group, she reached out with love to members of the lung cancer community locally and all over. She cared about people with her specific kind of lung cancer, and people with any kind of lung cancer. So many people talk about the difference she made for them. She loved us and she messaged us so much! She also loved her care team, spoke highly of them and thanked them. She made a special presentation at the West end hospital where she received much of her care and they did a special story about her. She embraced the inclusive nature of The White Ribbon Project, and gave Ribbons to a wide variety of people connected to lung cancer in various ways, including members of her care team. Even in the short time I knew her I could see that everywhere Brigitte went she brought joy and love. I’m so thankful to have met her, loved her and welcomed her into the lung cancer community. I’m so very thankful for our oncologist who encouraged her to connect and told her about our support group.
This is awesome! The Ottawa Senators care so much about people affected by lung cancer that they set aside time to sign a stack of The White Ribbon Project ribbons to give to people newly diagnosed with lung cancer at The Ottawa Hospital Cancer Centre. The Weir family is a major reason that The Ottawa Senators are part of The White Ribbon Project community.
Bill & Lisa Weir have made 400 The White Ribbon Project ribbons and given 370 of them out. They are very generous people who are giving with love, investing their time, talents and resources into people affected by lung cancer. They care. Their family is tremendously supportive. They have three grown children, twin grandsons and one due in July. Lisa is looking forward to turning 60 this year. Big milestones. In May 2020, Lisa was diagnosed with advanced lung cancer. Stage four. Both lungs. She started a clinical trial for her specific kind of lung cancer (KRAS G12C) in May 2021, and it’s working well. #ResearchMatters When she and Bill learned about The White Ribbon Project, they wanted to be part of it and reached out in the very early days to ask about making ribbons. By the end of February 2021 they had made 244 ribbons. Their daughter and son-in-law, Sam and Josh (who plays for the Senators), eagerly jumped on board as did many other family members, friends, teammates and more. What a difference their family and community is making for others. “In this family no one fights alone.” It’s so good to know the Weir family. They are kind people, good, generous and eager advocates, silver linings of lung cancer. Thank you, Weir family and extended community.
Sam Weir delivering stacks of ribbons to Ottawa, early 2021Bill Weir mailing packages of ribbons across Canada, from British Columbia to Nova Scotia
Dr. Paul Wheatley-Price is another important The White Ribbon Project community member. He is a medical oncologist who has stepped into an even bigger leadership role at The Ottawa Hospital Cancer Centre, giving out ribbons with love. He knows the story of The White Ribbon Project and the importance of love in the making and giving of ribbons. He understands the power of the Ribbon to gather, unite and uplift the lung cancer community in love. He came over to our home today to pick this new batch up. (Thank you to first born for taking pictures.) He was at the Ottawa Community Ribbon Build back in August 2021, and gave out a stack of ribbons to the newly diagnosed in the Fall and Winter. He has been showing he cares about people affected by lung cancer for years. He has played a key role in advocacy, and is a terrific partner in advocacy. He helped us get the first lung cancer outreach table on World Lung Cancer Day, August 1, 2018 at the Cancer Centre (and has continued to support them), and he helped Andrea and me with the annual patient-driven lung cancer patient summits that we held prior to COVID. Having someone like Paul be part of the team makes a phenomenal difference. Multi-disciplinary advocacy teams are powerful game-changers. Paul is a real door-opener. We are so glad he has taken on this important role with The White Ribbon Project, giving out ribbons with love in Ottawa.
Below are some pictures showing just a small portion of Paul’s tremendous advocacy (over years) for people affected by lung cancer. He is a powerful force.
Paul was part of Ottawa’s community ribbon build in August 2021.
Here is Paul today, picking up ribbons at our home. Thank you, Paul, for consistently going the extra mile.
People are asking for updates, so it’s good to let you know that though there have been a rough few days, the weekend was a little bit better. It’s hard to believe it’s already Wednesday evening. A busy few days taking care of some important items on the to do list.
Another important health update: our awesome friend and neighbour, Chris, drove us to the Cancer Centre for blood work on Monday. Blood has been successfully drawn and sent off to be tested for some potential new circulating tumour DNA which might lead to a potential precision oncology treatment option. Now we wait. With hope.
Back to the week-end update!
The kids and I have had some very good conversations, and we spent time singing together on Saturday, with the middle child on the guitar. For years, a vocal chord has been paralyzed so it’s been challenging to speak, sing, etc. Lately it’s been gradually improving, and the past few days it’s noticeably better. Very thankful! Singing is nothing like it was before cancer, but it’s very good to have recently gotten back almost an octave and a half. So thankful.
Our wonderful church family brought three meals on Thursday, as they have been doing every chemo cycle for quite some time. For a long time before then, dear friends had been bringing food. We had asked for only one meal each three weeks, but suddenly realized that one meal wasn’t quite enough. That realization coincided with a call from one of the pastors asking if the church team could bring food for us. It made good sense (since our need had increased) to give our friends a break and switch to a bigger team. We are very grateful for the abundant generosity of our community.
Friends have been coming by with bagels, treats, additional meals, additional treats, additional bagels, additional treats, and more. We are blessed and appreciative. Thank you so much!
Here is a big treat from Sunday:
Canadian White Ribbon maker and fellow lung cancer survivor advocate, Lisa Weir came (from London Ontario) to visit us with her daughter Sam today. (Thank you to my first born for taking this picture.) The Weir family has made 400 White Ribbons – with love – as part of The White Ribbon Project. We have so much appreciation for them and others who have worked together as a good, kind, loving team to make and give out ribbons with love across Canada. Lisa has also been a great friend and strong supporter. She and Sam came with armloads of dinner for us. They are very kind and good, supportive friends. #grateful
This past year, Sam brought several armloads of ribbons from London to Ottawa to be distributed with love. She is awesome! Thank you, Sam. Sam is married to Josh Brown who plays for the Ottawa Senators. They are huge supporters of Lisa and others affected by lung cancer. Sam has also brought White Ribbons for the Sens to sign. Some have already been given (with love) to lung cancer survivors. Dr. Paul Wheatley-Price is coming by this week to pick up more to be given out to people diagnosed with lung cancer. #thankful
Ribbons made with love by the Weir family were given to Hockey Legend Guy Lafleur who is a powerful advocate for people affected by lung cancer. The Weir family had sent a bundle of ribbons to Robert and Melina in Montreal so they could give them out with love there. Seeing how Guy Lafleur (who had been diagnosed with lung cancer) was advocating for research motivated our team to get him a White Ribbon to express our appreciation for his good work. Reached out to Dr. Normand Blais at CHUM (we’ve both been part of Canadian Cancer Trials Group Lung Executive). Dr. Blais connected with M. Lafleur’s team and worked to make it happen. Robert and Melina brought White Ribbons to Dr. Blais who took them into the Cancer Centre. Here are the pictures. (Dr. Blais is on the right.)
François Morin, Mustapha Tehfe, Guy Lafleur, Marilyn Lefebvre, Normand Blais.
Many of you know that Canada is a bilingual nation, with 20-25% of Canadians speaking French as their first language, including people pictured above. The White Ribbon Project is an international movement, and right from early days we discussed how important it is to make ribbon labels in local languages, and how we could best do this. The reason language matters is because language is love and The White Ribbon Project highly values love. We really wanted to make ribbon labels in French. We were not able to make it happen in time for this photo shoot above, but at the Ottawa community build in August 2021 we made the first French ribbons, many of which have been given with love. (Since then, Ribbons in other languages have also been made and given with love.) Here are some Ottawa build pictures from August.
I’m at cancer centre getting chemo. I needed help getting in since my shortness of breath got significantly worse overnight. Thankful for the new lovely friend who drove me, the porter, the receptionists at the COVID questions table and at chemo, and my good nurse Jessica who went above and beyond. She rolled me in to spend time with (and give a The White Ribbon Project Ribbon to) fellow lung cancer survivor undergoing treatment here at The Ottawa Hospital Cancer Centre, Taylor Westerman, and even took the following picture:
Jessica offered to help after seeing us take this one:
Here she is flushing my brand new port, inserted two days ago. Right now chemotherapy is flowing through it, into my body, fighting and destroying cancer cells! So excited and grateful to be using the new port! I know I’m new to having a port, but so far so good. Not painful. Thank you port insertion team. Thank you Jessica!
And thank you to the lovely young woman who brought ice chips!
In case you missed it, my shortness of breath got much worse overnight. I’m concerned and have talked to the nurses and asked for additional symptom control and supportive care. We continue to explore treatment options and hold onto hope.
Hope matters. Research matters. Supportive care matters. Keep holding onto hope!
Time for an update about my health in general. Many of you have reached out to ask how I’m doing, some of you have told me you’ve been wondering but haven’t wanted to ask. I’ve received so many messages that I haven’t respond to most of them. I’m very grateful for the care.
Unfortunately there isn’t any more news from the testing done while I was in hospital last month. I’m on oxygen due to shortness of breath, and we don’t know how to treat whatever is causing the shortness of breath. The hospital tests ruled out major things like cancer, heart issues, fluid build-up, blood clots, several infections. We ended up with an uncomfortable mystery.
Obviously breathing really matters, and not knowing why a person’s blood oxygen level dips so low is not good news. We would really like there to be better news to share with you, but right now, sadly, there isn’t.
So for now we will hold onto hope and stay the course with the current treatment while looking into other possible treatment options in case this may be caused by cancer growth (which it might be, though the scans do not clearly show this). There are no clinical trials that we know of that could be a good fit for someone in my situation right now. (If you are in Canada and looking for a clinical trial that might be a good fit for you, you can connect with the Clinical Trials Navigator who is there to help you! Canadian Cancer Clinical Trials Navigator: https://3ctn.ca/for-patients/clinical-trials-nav/ )
Since starting on chemotherapy in 2020, each scan has led us to believe that the cancer is either stable or smaller. We continue to believe that the current treatment is effectively slowing the cancer’s growth (even if not fully abolishing it), so it’s definitely better to continue than to stop. We will go ahead with chemotherapy number 23 tomorrow, do more testing (bloodwork to be done on Monday and sent to Canexia in Vancouver BC Canada), and hold onto hope.
(One of the ways I hold onto hope is to pray, another is to read the Bible, another is to listen to wise friends.)
Fellow lung cancer survivor Taylor and I plan to connect tomorrow morning. (We met in person last chemo and get chemo on the same three-week cycle at The Ottawa Hospital.) I’ll go in a little early to get to see him and give him a white ribbon www.thewhiteribbonproject.org . The White Ribbon Project connects people affected by lung cancer worldwide, and is helping to draw people into community locally also. The power of the white ribbon. How good is that!
You may have noticed I’ve been a little less visible on social media in recent weeks. Yesterday after the port insertion I missed out on uplifting and honouring amazing women for International Women’s Day #IWD2022.
Honouring and uplifting people is good to do every day. Since I didn’t yesterday, today I’m sending out a big general cheer for the women who do tremendous work in the cancer advocacy landscape (too many to name individually, so I’ll name some of the organizations where we may have worked as teammates together): CCTG, 3CTN, OICR, CCS, IASLC, ILCF, LCC, SU2C, LHF, CCSN, CAPO, IPOS, CADTH, TOH, CCMB, PMH, CIHR, LUNGevity, GO2, LuCE, ALK+, AACR, ASCO, … (+ numerous other advocates who have inspired outside of these organizations). What a list! If you are an advocate and there is a way I might help you connect with some amazing teammates in any of these organizations, please feel free to ask. Connecting and uplifting people is a passion. #team
Ottawa Clinical Trials Team (2017?)
In the pictures above are just a few of the amazing women (and some men) who have inspired many of us. (These are pictures I could quickly find and put on my blog tonight.) So many are not pictured above, and there are very many more to come!
I first met Heidi in a Zoom call organized by Team Draft the summer of 2020. Right away it was easy to see that she is a loving person who genuinely cares about people. A few months later she told us (in a zoom call organized by Team Draft) that she was fed up with her cancer center’s reluctance to promote lung cancer awareness, that she had asked her husband Pierre to make a big white ribbon for their door, and then they started making them for friends and strangers. She generously sent them out to everyone on that call, even me in Canada. I was the only Canadian on that call and, knowing that international shipping can be expensive I didn’t want to ask. Heidi’s love and generosity made my concerns seem ridiculous. She wanted to give ribbons to everyone willing to stand up for lung cancer, to make people feel cared for. Heidi is rare and meeting her was very special.
Those first few ribbons have multiplied into a movement! Hundreds of lung cancer advocates are rising up with their ribbon, taking photo’s and posting on social media, raising lung cancer awareness across the US and Canada, and the Netherlands, the Philippines, Ireland and expanding across Europe in partnership with Lung Cancer Europe, as well as other growing international partnerships. Together we are driving change.
Niels Harthoorn, The Netherlands
Niels Harthoorn, the Netherlands
Ronaldo Peralta, the Philippines
Dr. Jarushka Naidoo and members of Team Ireland
Heidi and Pierre have made 832 ribbons, and also assisted at other builds as they traveled around the US on The White Ribbon Project Tour. Heidi and Pierre have paid for all the ribbons they have made and sent, and all their expenses on the six-week tour. As they travelled around, rather than taking donations, Heidi and Pierre encouraged people to invest in their local community, to form a team, host a build or contribute to one, participate in making ribbons with love and giving them with love. Teams have been forming in many communities, and this is where the action happens!
We are very grateful for teams in Canada like Lisa and Bill Weir who have made 244 ribbons, Alvin and Carolanne Johns who have made 45, the Monds’ team who made 20, and others who are in process of team building.
The Ottawa team held a community build in solidarity with The White Ribbon Project Tour. People contributed their time, talents, supplies, food, drink, even hand sanitizer. In keeping with the inclusivity of The WRP, patients, caregivers, survivors, family, friends, doctors, nurses, administrators, politicians and others were invited. There was much love and laughter at our outdoor venue that hot August afternoon. What a gift to be together, building relationships as well as ribbons, loving and serving our community.
The Ottawa team knows that advocacy is relational work which doesn’t just happen during Lung Cancer Awareness Month in November. We are committed to making people aware and making people feel loved year round. That’s why we set up outreach tables in our cancer centre to welcome people, show them love and give them information. We started annual summits to gather the community and offer learning opportunities. We also gathered a team to put together a welcome package which includes a letter from lung cancer survivors with contact information. This is given out year round, to everyone newly diagnosed. The Ottawa team made a choice to be involved in making people aware, and making sure people know they are loved.
What is your cancer centre doing for Lung Cancer Awareness Month this November? What is the plan for lung cancer every day?
The White Ribbon Project is committed to making sure people affected by lung cancer know they are not alone. Together we are committed to changing the public perception of lung cancer. Together we are driving change. It takes a team of people who decide to take action to get the job done. Let’s work together!
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.
In September, @chubbyemu messaged to ask if I would be willing to share my lung cancer story. A conversation ensued, culminating in this video shoot and release in March. Here is the link for the video on his @HemeReview YouTube channel: Interview with a Stage 4 Lung Cancer Survivor (Jill Hamer-Wilson) .
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!
Through the Valley 