What is a cancer support group worth? Who can place a value on a group like this? We can encourage each other, support each other, lift each other up. We can help each other know we’re not alone. Together we can hold onto hope. Imagine what more we can do!
Together we are the Ottawa Lung Cancer Support Group. The Jelly Bean Gang. The Ottawa Circle. #LungCancerStrong
Here is how we looked on Zoom today. Due to COVID we’ve temporarily pivoted to the online world. Screenshot at 4:09pm EDT, shared with permission. Look at our faithful leader and all these beautiful lung cancer survivors, one on horseback, celebrating one year since diagnosis. Happy “Cancerversary”! Looking good, Ottawa!
Wouldn’t it be good if everyone affected by cancer had a support group to be part of?
This is a good time to let you know that I’ve been experiencing some shortness of breath. It has suddenly gotten much worse, and yesterday a phone call to the nurse updated the team with that news. She thought we should try to move the date of my CT scan up, and took steps to make that happen. I got a call on Thursday afternoon with a reschedule for late Friday evening instead of next Friday. Very thankful for a good care team and the opening at the hospital.
When my friend dropped me at the main entrance to the General campus of The Ottawa Hospital, I thought I would be able to walk (slowly) to the CT scan module, but it turned out that I couldn’t even make it to the COVID screening station. I sat in a wheelchair that was “parked” nearby and texted my friend who came straight away and wheeled me to my CT scan, then to Emergency. A kind nurse there (who had lost both parents to lung cancer) hooked me up to oxygen, and my blood ox is now at 100%. I’m feeling so much better!
Obviously we need to figure out what’s going on and come up with a plan, so we’ve run a few tests and are waiting for results.
I plan to update you again when we know more.
Just checked again and the monitor says my blood oxygen level is still 100% – what a great feeling. Very thankful for oxygen.
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.
Chemo number 19 down this afternoon! I’ve been getting chemo every three weeks since November 2020 and we are so very thankful I’m still going strong. Nineteen rounds, over a year … this is worth celebrating!
Some people are afraid of chemo and / or very reluctant to take it. Chemo is way easier than it used to be. Everyone is unique and chemo affects everyone uniquely so why not give it a try? I’m finding it’s doable, even after a year, even after eight years of cancer treatments. Every three weeks there are several days when I’m very tired, and there are a few other side effects. This is hard but not too hard with plans in place and a good support team. I started chemo with the hope that there would be a new treatment, a clinical trial ready for me maybe even as soon as last summer. I keep hanging on, hoping for research to come through for me and others like me. More research means more survivors and better survivorship.
So many of us are making the most of the gift of time we are being given, doing our best to live well with lung cancer and/or other kinds of cancer, reach more milestones, make more memories. I work hard at advocacy and supporting people diagnosed with lung cancer and other kinds of cancers because I know it really matters and it makes a difference.
Chemo can bring a mental and / or emotional battle as well as a physical battle. I remember well the very first time I had chemo, back in December 2013, five days after I was diagnosed with stage four lung cancer. I had worked so hard to take good care of my body by living an active life, eating healthy, and using only natural, toxin-free products, and here I was at the cancer centre to have a hole poked in my arm to inject toxic chemotherapy. I cried. I still find this process challenging, but I know it’s worth it because although it brings some harm to my body, it’s kicking cancer to the curb. Every scan this year has been good news that the cancer is stable or slightly smaller. So thankful! Definitely worth it!
After eight years of constant treatments (mostly targeted therapies which are generally much easier on people than chemotherapy is) like so many others I’ve suffered a long list of treatment-related side effects, many of which have lasted through these eight years. Like many other people I have experienced nerve damage, especially to the hands and feet, hearing loss, vision changes, skin problems, digestive issues, changes to nails and hair, and many other things. Survivorship is good and it can bring challenges.
I’m very thankful for over a year of chemotherapy which has helped bring my total up to eight years of stage four cancer survivorship. With so many others affected by lung cancer and other cancers, we hold onto hope for a clinical trial or other form of new treatment that will work for us and keep us going strong for years. I know beyond a shadow of doubt that things can change in the blink of an eye! Having lived in Ottawa Canada most of my life, I’ve seen Winter melt into Spring each year and this helps reinvigorate hope and faith! Yesterday I drove into the Cancer Centre for blood work through such ice and snow that had to use my memory and imagination to figure out where the street lanes were. Today it was mostly melted, the sun was shining and the temperature was a balmy 14 degrees Celcius (57 degrees Fahrenheit) with a beautiful breeze! Such a gorgeous and rare weather experience for December in Ottawa Canada!
I got back home in time to see a lovely friend from church who brought a five-day feast (from her and two other dear souls) for the kids and me, then a few calls and messages from caring, supportive friends. Grateful for many kind friends who make being on chemotherapy so much more doable. It takes a team. We all need support. So much to be thankful for!
Nineteen rounds down and hoping for much more research and many more treatment options for people facing cancer!
Before I met Kim MacIntosh I knew I would like her, because of the way my friends were speaking of her.
I couldn’t go to the World Conference on Lung Cancer in Toronto in 2018 because I had suffered progression. Andrea and Peggy promised to tell me all about it when they came back, and they did!
There were so many exciting stories: people they’d met, promising new research, fun times, but of all the details in all the stories, Kim was the person who stood out by far! I couldn’t wait to meet this lung cancer survivor advocate that I’d heard so much about.
Kim started driving in to our Ottawa lung cancer support groups – more than an hour each way, and she fit right in with the group. It was so good to get to know this lung cancer sister.
Kim cared about people. She deeply loved her family: husband Dean and daughters Ceilidh and Sadie, her parents, siblings and extended family; and friends, especially her besties. She spoke often of them and participated in all kinds of traditions with them that filled her calendar with meaning, joy and laughter. She knew half of Cornwall, and a good deal of other people as well.
Before Kim was diagnosed with lung cancer she worked as a nurse and had a fierce passion for advocacy. Kim brought her medical and scientific knowledge, her understanding of how the system works, and her prior passion for people and advocacy to her lung cancer advocacy. She could often be overheard encouraging people to apply for their disability parking pass or tax credit, reminding them that they were entitled to it and telling them step by step how to go about applying. Kim cared about people.
Andrea and I compiled this list of highlights of Kim’s lung cancer advocacy:
– early member Ottawa Lung Cancer Support Group (October 2018)
– IASLC World Conference on Lung Cancer, Toronto 2018
– staffed outreach tables at The Ottawa Hospital Cancer Centre
– shared her cancer story at the Ottawa Lung Cancer Patient Summit, November 2019
– went to LUNGevity conference in Washington DC, 2019
– member of the EGFR Resisters
– started the EGFR Canada fb group
– early leader in the Canadian Lung Cancer Advocacy — Breathe Hope fb group
– very strong presence on Twitter and on fb. Shared lots of research etc.
– co-designed the Lung Cancer Strong tee shirts and organized the ordering, printing and distribution
– completed IASLC’s STARs Program in 2019 and attended WCLC 2019 in Barcelona
– participated in June 2019 CCSN/LCC Breakfast and meetings with MPPs on Parliament Hill
– made a video on her experience as a LC patient for CCSN’s Right to Survive campaign
– did a podcast for LCC with Dr. Paul Wheatley-Price
– member of Programs Committee, Lung Cancer Canada
– participated in The White Ribbon Project for lung cancer awareness and travelled in both Ontario & Quebec distributing white ribbons to lung cancer patients, advocates & medical staff
Kim was a good friend to many, a devoted wife and mom, and a fierce advocate for lung cancer and other important causes. She was deeply loved and she is missed. RIP, Kim, and thank you.
Kimberley Ann (Moran) MacIntosh September 30, 1967 – November 17, 2021
Cheers to the researchers, and the whole team who has helped keep this mom of three alive for seven years since a stage four lung cancer diagnosis December 2013!
I’m so grateful to be here! My life is enriched through knowing and spending time with a variety of very special people (whether online, on the phone or in person). I’m blessed with dear friends and meaningful work as a lung cancer survivor advocate. This weekend, two of my fellow lung cancer survivor advocates sisters gave our family this feast to celebrate my seventh “cancerversary”, along with a beautiful card. Thank you, Andrea and Kim! (photo’s of people all taken before COVID).
This seventh year has meant a lot because my youngest turned 13. She was only 6 when I was diagnosed, and she doesn’t have many memories from before then. During these seven years she has grown and matured, and I catch so many glimpses of the amazing young woman she is becoming. Now we’re in this brief, sweet spot where all three are teens. Parenting adolescents isn’t easy, but it’s a privilege and there is so much joy. The oldest is doing well in his second year of Electrical Engineering and Physics at University, and the middle one is currently enjoying a high school co-op placement perfectly suited to him and his love of music and music education. What a gift to walk with them through this season! #ResearchMatters
Here are some photo’s of the kids from the past seven years. We are so grateful for milestones and memories!
We owe a debt of gratitude to the researchers who, through creative brilliance, steadfast discipline and diligent tenacity navigate the twists and turns, false starts and dead ends that form the research pathway from bench to bedside, from idea to effective treatment.
And the whole team of administrators, statisticians, economists, funders, panel members, visionaries, regulators, encouragers, and so very many more very necessary and important team members, Thank you!
Way to go, team! Thank you! Thank you for working to keep me alive these seven years! On behalf of family, friends and communities, THANK YOU!!!
We had no idea I’d still be alive seven years after diagnosis. Please keep working hard with urgency so that I and others like me can live longer and better!
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.
What do you think of when you think of lung cancer?
Before I was diagnosed, I did not know much beyond the connection between smoking and lung cancer.
For decades, an enormous anti-smoking, lung cancer prevention campaign has been waged. Huge amounts of energy and funding have been invested, but prevention alone is not enough. In spite of prevention efforts, the Canadian Cancer Society estimates that 29,300 Canadians will be diagnosed with lung cancer in 2019. That’s the size of a town.
A town-full of people diagnosed with lung cancer each year.
Clearly a prevention campaign is not enough.
Candid conversations which evaluate the past and examine the present shine light on paths into the future.
It’s time for lung cancer to shift to a well-rounded campaign which dedicates appropriate resourcing to five pillars of lung cancer:
Awareness, Early Detection, Treatment, Research and Survivorship.
When we allocate funding appropriately, we will drive change in lung cancer survivorship.
A town full of people each year! Who will get lung cancer next year?
Anyone can get lung cancer.
The research we fund today might extend your life.