Six years and seven weeks ago, like many other parents of young children in the schoolyard that year, I had a cold with a cough which persisted.
Six years ago I was constantly coughing, and beginning to realize that the inhaler the doctor prescribed wasn’t working. I coughed so much I had to step down from the choir I had been rehearsing with to sing Messiah.
Six years ago we had started to suspect something was terribly wrong. I could hardly speak a sentence without coughing. When faced with a flight of stairs, I wondered if I could climb them.
We knew something was wrong, but had no idea it could be lung cancer. I started undergoing a myriad of tests, and when we finally got my diagnosis that December, it seemed impossible. When I learned I had advanced lung cancer I had no hope.
I did not know what to expect, but I never expected this: that six years later I am living life!
I had no idea I would still be alive six years later, never imagined I could be this alive and vibrant.
I never dreamed I would live this long.
Shortly after my diagnosis I read the research on Crizotinib, the first new targeted therapy pill my oncologist mentioned. I rejoiced that so many of the people on Crizotinib were still alive six months later. Six months seemed like such a long time, such a lot of opportunity to live, such a great gift for someone with lung cancer… and here I am, six years later.
Six years: chemo, Crizotinib, Clinical Trial: Ceritinib, Alectinib, Lorlatinib. Cutting edge new research keeping me alive these years. Every time the cancer outsmarted a med, a new treatment has been available – typically just in the nick of time – so very grateful! Research is giving me so many days to celebrate, gifts of countless moments, memories, milestones.
My children were 6, 10 and 12 when I was diagnosed. They have had a Mom right with them as they’ve grown these six years. My daughter is now 12, my sons 16 and 18. My oldest started University this Fall (Electrical Engineering and Physics, still living at home!). I’m still in the picture. I still get to talk with them, cook for them, hug them, encourage them, love them.
“Grateful” is only the beginning of how immensely thankful I am to be alive and living so well six years later. I thank God for lung cancer research and the difference it makes.
The International Association for the Study of Lung Cancer (IASLC) has a new program for training patient research advocates, called STARS. The six-month training process began back in May when five Patient Research Advocates were chosen from around the world. It continues with webinars, calls and mentoring, culminates with the IASLC World Conference on Lung Cancer next week, and concludes with presentations in October.
The IASLC Supportive Training for Advocates on Research & Science (STARS) program aims to increase the number of Patient Research Advocates (PRAs) equipped to provide accurate scientific translation in their online or real-life lung cancer patient/caregiver groups and to provide the patient perspective for lung cancer research and policy.
I am very happy to report that Canada was chosen for one of the STARS positions. Our very own Kim MacIntosh, who lives in Cornwall Ontario and is part of our Ottawa Lung Cancer Support Group, is one of only five STARS worldwide! She has been learning more about lung cancer research and advocacy through webinars and conversations. Each one of the STARS is paired with a mentor for six months, and I’m delighted to be a mentor for Kim. We are both treated at The Ottawa Hospital.
The IASLC World Conference on Lung Cancer (#WCLC19) is the world’s largest international gathering of clinicians, researchers and scientists in the field of lung cancer and thoracic oncology. This year it takes place September 7-10 in Barcelona. Kim and I will be there, representing Canada, along with Christine Wu who earned one of only five IASLC patient advocacy travel awards for her hard work in lung cancer advocacy. Among other achievements, Christine helped start the Winnipeg support group. I look forward to connecting with people, examining best practices and exploring partnerships that will best serve the Canadian community.
We know that representing Canada at #WCLC19 is a privilege and responsibility. We welcome questions, and will do our best to track down experts there to answer them. We will be sharing information about new lung cancer research with other lung cancer advocates who are leaders in their communities, and posting on YouTube, facebook, Twitter and Instagram. Please follow us and share the news about lung cancer research. It’s up to all of us to share about the exciting advances which are changing outcomes and extending lives.
I owe a debt of gratitude to many people and partners who helped prepare me for this mentoring role in the STARS program. I am especially grateful for the American Association for Cancer Research Scientist <–> Survivor Program, which I participated in last Spring at the Annual Meeting in Atlanta, #AACRSSP19. There cancer advocates were engaged, equipped, and honoured for their work. I am also very grateful for the ways I am learning through serving as Lung Site Patient Representative for the Canadian Cancer Trials Group, and the mentoring of International Lung Cancer Advocate Chris Draft.
Are you going to #WCLC19? Is your doctor? If you or anyone else you know is going, please be in touch and encourage her/him to connect with me. I’m looking forward to meeting more members of our lung cancer community!
What is happening at your local cancer centre for Lung Cancer Awareness Month (#LCAM)? At The Ottawa Hospital Cancer Centre, our team of survivors plus Ottawa Hospital people have already started planning our second annual survivor-driven Lung Cancer Summit, geared to the Ottawa community. This is a great opportunity to share exciting new research from the World Conference for Lung Cancer out into the community.
Cancer Centres plus advocates are a great combination! If we don’t tell people about exciting advances in lung cancer research, who will? It’s up to us to spread the news about the difference lung cancer research is making for survivors! #ResearchMatters #ResearchWorks
Please let me know what is happening in your community.
It takes a whole village! I’m grateful for the village that my daughter gets to be part of at camp. Leaders, campers, and so many behind-the-scenes-folks who have worked hard, given sacrificially, and made a tremendous difference for many people over 90 years. What a tremendous village!
It took a (much smaller) village to get my daughter to camp this year! My husband couldn’t, and I don’t have a lot of driving stamina. (It’s a five hour trip each way.) Thank you to friends who worked hard looking for a ride for her. The best choice was for generous friends to watch our dog, and another generous friend to come along and share the driving with me. So grateful for our generous team, and the strong support of our village!
What an amazing day! The dog-sitter (and family) was very happy spending time with our dog, and has offered to walk him while my daughter is away. I really enjoyed my day! Of course it was sad saying goodbye to my daughter, but I kept reminding myself about what a great time she’s having at camp. I did not feel tired out from the trip, in fact this morning my legs are full of energy and raring to go for a bike ride!
I’m very grateful for our dear friend Chris, who drove part of the way there and most of the way back. Our day was filled with great conversation, lots of laughter, a picnic lunch & wade at the Port Sydney beach, Kawartha dairy ice cream (thank you, Chris!), singing along to a great selection of tunes which Chris brought, and scenic Ontario views, some of which I share with you below…
Port Sydney Beach:
Scenes From a Car, Ontario (taken en route from the passenger seat)
Before my diagnosis in the Fall of 2013, I didn’t give much thought to the lung cancer team here in Ottawa. Now I am very thankful for them and glad to be getting to know the folks at The Ottawa Hospital Cancer Centre (TOHCC), and others who’ve been working hard for people affected by lung cancer. There are many I’ve never met, and I don’t have enough pictures – couldn’t even find one of my own oncologist – but here are a few:
Above is Evening of Hope, November 24, 2016, organized by the phenomenal Louise and her dedicated team. It is one of the terrific annual lung cancer fundraising events in Ottawa. Top Left is Elizabeth, who blogged at this link, and changed the face of lung cancer. Her mom, Robyn, is pictured several photo’s below, from last month’s 2K.
Almost a year ago we held our first ever Lung Cancer Hope Table in our Cancer Centre. It was a special event for World Lung Cancer Day, which is August 1. You can read about that day and what led up to it here.
That one Day of Hope made such a difference that we decided to hold them every month. This is what our terrific team has been doing ever since. Every month we co-ordinate with the cancer centre to have a table set out for us. We keep our supply of information from Lung Cancer Canada, the International Association for the Study of Lung Cancer (IASLC), and other organizations conveniently stored in a generous oncologist’s office at the Cancer Centre. Most importantly, every month we show up at the Cancer Centre to show love and share hope.
What an honour to be there to brighten a person’s day! Our team makes a difference for lung cancer patients and caregivers, and everyone who stops by. People who work or volunteer at the Cancer Centre need hope and love just as much as the next person, maybe more. I can’t tell you how many people say things like, “This was just what I needed!” But they don’t need words to communicate the difference we make: we can see it clearly on their faces and in their body language. We are doing important work at the Cancer Centre.
This is a great way to tell people we have a support group and invite them to join us! We enjoy spending time together!
Our lung cancer support group has grown closer together because of these outreach tables. Our group has also grown larger! We have met so many wonderful people because we chose to invest a few hours sharing hope and love at the cancer centre. I want to give a big shout out to our support group for the difference we made at our Cancer Centre this year! Thank you for your great work! Thank you Andrea, for your faithful leadership! You kept us organized, and have established and maintained good relationships with people of our cancer centre!
The Cancer Centre has been very supportive. A big shout out to The Ottawa Hospital Cancer Centre! They supply the tables and have even started paying for our parking! They now post information about our group, with dates indicating when our next table will be. We have worked at building relationships at the cancer centre and earned trust. The oncologists have started telling their patients about us. It is encouraging and honouring that they do this, but it’s much bigger than that.
When we partner together, then we can truly start making a difference for people affected by lung cancer. There is no limit to what we can do when people who work in differing ways in the lung cancer community partner effectively together. When doctors and social workers and caregivers and nurses and survivors and researchers and fundraisers and communicators and advocates … all work together, we can make a world of good for people affected by lung cancer.
One person can make a big difference by sitting at a Hope table, by getting to know people at their cancer centre, by forming relationships and becoming a team together, and who knows what kind of difference that team can make!
Get to know your lung cancer community! Ask questions! Reach out!
So many great stories to tell, pictures to share, and blog posts yet to write! I’m feeling fantastic on my current med. I’m enjoying riding my bike. I’ve travelled three of the past five week-ends (all lung cancer related). I have loads of energy and I’m so very grateful.
#ResearchMatters #Hope #Grateful
On Saturday May 25, a fantastic group of lung cancer survivors, patients and friends are walking the 2K. It’s Ottawa Race Week-end, and we are joining in the celebration! “Lung Cancer Team Canada” is walking on behalf of all Canadians affected by lung cancer. We know that not everyone can walk, and we are walking to celebrate the fact that we can and to represent all who can’t.
If you can, we’d love for you join us! If you want to donate, we welcome that too. We are raising funds for Lung Cancer Canada, Canada’s only charitable organization devoted solely to Lung Cancer.
What I want most is for you to know that more research means more survivors and better survivorship! Please join in and celebrate the difference that lung cancer research makes. Cheer loudly for us, because we are lung cancer survivors, and we are strong!
We are also very grateful for our caring and hard-working #lungcancer team at The Ottawa Hospital. Dr. Paul Wheatley-Price, one of our terrific lung oncologists, is running the marathon for all Canadians affected by lung cancer on Sunday morning. Please join our group of lung cancer patients and survivors in watching for him and cheering loudly for him!!
On May 25, “Lung Cancer Team Canada” is walking 2K for all Canadians affected by lung cancer. We are #LungCancerStrong and we hope you will join us! Please walk with us, donate, and cheer for us! We welcome your support!!
What a lovely Easter! If you follow me on facebook, you may have seen that I had beautiful times with church family and good friends on Sunday. Today I enjoyed a fun walk with my daughter in the morning, then my middle son tuned up my bike and we went cycling together – not super fast nor far, but I enjoyed the wind in my hair and the sun on my face. We went about 7km, which is a little over 4 miles, and it felt good to be out, moving this body and spending time with my son! This evening I let my oldest help with the taxes! 🙂
It was really good to celebrate the resurrection by being with people who I love and who love me, and being active in the beautiful spring weather! So much to be thankful for! So much joy! I can’t tell you how thankful we are for these meds which are holding back the cancer. We hope they will work for a long time!