Inside scoop

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.

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.

Quick update

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!

No news isn’t always good news

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

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!

#hope

Compassionate and Skilled Care

I’m taking a moment to let you know that chemo #21 went well yesterday. My nurse was very kind, caring and skilled. She never mentioned that she was overdue for her break; she did not rush or complain. (I only knew about her break since I overheard someone else quietly mention it.) She spent over an hour warming my arms and carefully searching for a vein. She ended up finding only one, in the same spot where it worked last time. Thank you to those who prayed and sent good thoughts. She got it on the first poke! Thank you also to those who suggested good ideas like warm blankets and smaller needles. The nurses are very skilled and use those great strategies. I used to have great veins early on in treatment days, but not so much lately. Eight years of constant treatment takes its toll. While we survivors are very glad to be alive, survivorship can bring challenges.

I’m very thankful to be scheduled to get a port early on the morning of February 17, before chemo #22. The nurse should be able to use it for that chemo the same day. If all goes well, no more hunting for veins for a long time! It’s such a relief that busy nurses won’t have to spend so much of their time to insert a needle.

My oncologist, Dr. Nicholas, came to see me at chemo. He is very kind and hard working. The nurses also appreciate him and recognize that he is caring and compassionate as well as up to date with the latest research. We didn’t take a picture, but The Ottawa Hospital has posted at least three larger than life pictures of Dr. Nicholas with a fellow cancer survivor at the General Campus, so here is a picture of one of their pictures.

Compassionate and skilled care makes all the difference.

#grateful

Health and Advocacy Update

First the good news: I haven’t had a scan yet, but based on my perception, the chemo seems to be working! I’m breathing better, coughing less and swallowing a little better. Good news! So very grateful for another extension on life!

I had my third round of chemo on Monday January 11, and brought in one of the amazing white ribbons that Heidi and Pierre Onda from Colorado have been generously making and sending out with love to whoever asks for one. This is an inclusive, unbranded campaign to raise lung cancer awareness, and it goes by the hashtag #TheWhiteRibbonProject. It has a growing presence on social media and at cancer centers across North America.

This exciting campaign is growing, and here’s a video (generously made by Katie Brown of LUNGevity) which gives you a small taste of the number of lung cancer advocates, oncologists, researchers and others who have keenly participated. If you look closely, you may recognise awesome Eastern Ontario advocate Kim MacIntosh near the end, and me with the chemo receptionist at The Ottawa Hospital. That first video got stuffed full of photo’s, so Katie started a second one, and then a third one for Canada, and she keeps adding photo’s as we send them to her! Everyone is welcome to participate!

There I go again: I was supposed to be giving you a health update but got distracted by some of the amazing advocacy work that is going on!

Healthwise, so far I have had several really rough days each three week cycle. I spoke with a nurse to get insight on how to better manage the symptoms. I’ll plan and prepare, and this will help me better cope next cycle. I’ll also keep managing my mindset. I’m grateful for Chris Draft who calls and encourages. He is a tremendous advocacy trainer, and offers helpful wisdom like, “We control what we can control”. He is a strong supporter of so many health advocates worldwide, and we are grateful.

Exciting news: my barium swallow study is scheduled for this afternoon (i.e. Tuesday the 19th)! Ordered back in November, I’m very hopeful that this will answer questions about what is happening when I swallow, and give us good information to help me avoid getting aspiration pneumonia again. I also hope to be able to eat more kinds of foods! I have eaten a LOT of soup since the summer!

I’m back from the hospital, and the study went well. I felt a little nervous beforehand, but very relaxed this afternoon and grateful for the support from my support team of friends and also The Ottawa Hospital team. Emilie, the Speech-Language Pathologist was very kind and knowledgeable. She got me to sample a variety of textures of food and drink with barium added in, then the x-ray machine tracked what happened inside. I didn’t choke on anything. We gained new information which informed us about which further tests need to be ordered. I’m being referred to more specialists, and that support is very welcome. I feel privileged to live so close and be connected to the tremendous resources at The Ottawa Hospital.

Here is my amazing Speech-Language Therapist who ran the test. She was eager to take a picture in support of lung cancer awareness, and very supportive of this person affected by lung cancer. I’m very grateful for our big lung cancer team!

Emilie, The Ottawa Hospital Speech-Language Pathologist

A day in the life of an advocate

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

Chris Draft (far right) with some of the terrific lung cancer advocates from Australia, the Netherlands, Mexico and Canada at World Conference on Lung Cancer, Barcelona, 2019.

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.

My awesome oncologist, Dr. Garth Nicholas, who is part of this team (photo taken before COVID-19)

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!

My day was filled with conversations, emails, messages and more, but before it ended I also decided to participate in research. I filled out the first survey for the Canadian Cancer Trials Group study: CCTG SC27 – The Impact of the COVID-19 on Canadians Living with Cancer. If you would like to learn more about participating in this study, please click here!

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

photo credit: Chris Draft

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

Research and Hope

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.

Fundraising continues!

The Super Bowl Challenge is over, but the fundraising continues! It’s not too late to give to support people affected by lung cancer! Please note Team Jill’s new Canadian page 2020 link: http://donate.ottawacancer.ca/goto/teamjill

Going to the Super Bowl is the cherry on top of the real prize which is really about raising money and challenging our communities to stand up for people affected by lung cancer. The Super Bowl Challenge is over but the fundraising is not!

I’m here, alive more than 6 years after diagnosis. The lung cancer is controlled by one pill each day. We’re not ready to call this a chronic disease like diabetes, but for people with a diagnosis like mine, the median survival is 6.8 years. Those 6 years mean a lot. My kids have gone from being 6, 10 and 12 at time of diagnosis, to now being all teenagers. What a privilege, what a gift to be here with them! These 6 years mean a LOT!

Research matters! Research means more people with lung cancer will live longer. It is imperative that research is ongoing, and also that everyone diagnosed with lung cancer in Canada gets access to the best treatments available. That means biomarker testing and faster approval of effective treatments. Clinical trials give people access to new effective treatments.

It’s a shame we weren’t able to raise more money and create more access to treatments. We are continuing to work on opening up pathways: it shouldn’t be so hard to give money for lung cancer research!

Team Jill’s Canadian page has been migrated to its brand new 2020 link! Since that’s ready, Team Jill will be fundraising more actively again until the Feb. 3 deadline!

Once we raise $5000USD, 90% of the total raised will go to Ottawa lung cancer clinical trials. The other 10% will go to Team Draft’s excellent lung cancer initiatives.

Chris Draft gives tremendous support and leadership to lung cancer survivors and advocates around the world. He has made a strategic difference here in Ottawa, connecting with Louise and the Evening of Hope Team, Elizabeth Dessureault and her family, Kayla and Jordan MacWilliam and their community, and many more. We are grateful for him and his wisdom and encouragement.

Team Jill:  https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

OR: Team Jill’s 2020 Canadian page (for Canadian Income Tax receipts):  http://donate.ottawacancer.ca/goto/teamjill

Day Ten – Thanksgiving

12 Days of Giving to Lung Cancer Clinical Trials

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!

Team Jill:  https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

OR: Team Jill’s Canadian page (for Canadian Income Tax receipts): http://donate.ottawacancer.ca/goto/jill 

#12Days of giving to #lungcancer #clinicaltrials #Hope #Care #Team #Support #SilverLinings #Stories #Awareness #Early Detection #Treatment #Research #Survivorship #TeamDraft #ChrisDraft #ThankYou #lcsm

6 Geese a-laying – Research

12 Days of Giving to Lung Cancer Clinical Trials

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.

#ResearchMatters

Team Jill:  https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

OR: Team Jill’s Canadian page (for Canadian Income Tax receipts): http://donate.ottawacancer.ca/goto/jill 

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!

This image has an empty alt attribute; its file name is screen-shot-2019-11-30-at-4.21.51-pm.png
Click here to see the video

#12Days of giving to #lungcancer #clinicaltrials #Hope #Care #Team #Support #SilverLinings #Stories #Awareness #Early Detection #Treatment #Research #Survivorship #ThankYou