Many thanks to all you who have prayed, called, and messaged this week while I’ve been undergoing daily radiation treatments. I’m very grateful for your care and support. Cancer can be hard in many ways, and many of you know firsthand what it is like to be diagnosed or to walk with someone diagnosed with cancer.
We all need support, and this week has powerfully reinforced the difference supportive caring people make for someone facing cancer. Treatments this week have been challenging, and your words and actions have tremendously encouraged and helped. Thank you.
Never doubt the difference you can make for someone.
This is why I’m so passionate about lung cancer support groups. They can make a huge difference! It doesn’t take much to start one up. If you’d like to talk about it, please reach out. Helping get another support group going is definitely something worth investing time and energy in!
Four down and one to go! I’m so grateful I’m not journeying alone.
(All photo’s were taken prior to COVID-19, except the one of our Ottawa lung cancer support group meeting by zoom.)
A team of five cancer advocates are excited to announce that the article we wrote was published today!
A year ago today, Diane Manii and I were travelling to Banff Alberta to participate in an international conference for professionals who support people living with cancer.
My goal was to represent people with lung cancer and introduce myself to as many people as I could, kindly challenging them to do more for people affected by lung cancer.
I brought a pile of Canadian flag pins from the office of Catherine McKenna, my elected official. I’d been to her office for pins quite a few times in recent years, and her staff were always generous with pins and pleased to talk about lung cancer with me. Pins are a great excuse to build relationship, near and far. I gave out quite a few in Banff, while telling my lung cancer story to people and asking lots of questions about them and the situation where they work.
I had great conversations with a wide variety of people, including some that I had met prior to the conference. There are so many skilled and caring people working in the cancer world, but the people at this conference – social workers, physiotherapists, psychologists, and the like – asked me way more questions about my family and my cancer journey than most people typically do. I felt cared for as a person, and that was a good gift.
Many people came to hear Diane and me, when we presented about the Ottawa Lung Cancer Support Group. They listened intently as we spoke and asked thoughtful questions afterwards. I deeply hope that many of them have started up lung cancer support groups in the past year. We certainly challenged them to do so. If you want to start up a support group, it’s not hard and there are lots of people willing to help. Diane was an excellent leader who really got us started well, then left us in the very capable hands of Dr. Sophie Lebel when she retired.
For the first time ever, this conference was “Patients Included”, not only incorporating experiences, but also offering five scholarships for people affected by cancer to participate in the full conference.
These scholarships were earned by: Lorna Larsen (@TeamShan Breast Cancer Awareness for Young Women), Karen Haas (@caringcancermom Childhood Cancer advocate mom), Margaret Ng (Brain cancer survivor and wellness worker), Dr. Vicky Forster (@vickyyyf Childhood cancer survivor, cancer research scientist and science writer), and myself (@JillHW lung cancer survivor advocate). It was great to be able to connect with them all!
Vicky and I met when I was looking for a spot for lunch and noticed an empty seat beside her. It was a treat to meet someone so likeminded and engaging. Like me, she is a real people person and connector. We quickly discovered that we were both going to be in Toronto a few weeks later to serve as patient representatives with the Canadian Cancer Society.
We’re excited to share with you this paper about our experiences attending the conference. It is written by all five advocates, and Vicky Forster gave great leadership to the process, putting her connecting and communicating skills to work. Thank you, Vicky!
Research shows that partnerships lead to better research! Thank you to the International Psychosocial Oncology Society, The Canadian Association of Psychosocial Oncology, Dr. Fiona Schulte and Dr. Linda E. Carlson for strongly supporting patient/survivor advocates.
Here’s to all those who bravely share themselves, who share their stories. It can be hard to be vulnerable, to open up and reveal your authentic self, to share difficult details, engage in courageous conversations. It can be hard to go public with your story. Stories matter. Sharing stories shifts culture, drives change, changes the face of lung cancer. Here’s to all who brave those challenges who share their own stories.
Here’s to all who share lung cancer stories, hospital communications teams, writers, photographers, videographers, sound technicians, cancer centre public relations people, reporters, and all kinds of media and behind the scenes folks. Cheers to all those who are supportive and work hard to tell our stories well. Thank you for helping get our stories out, for they are important and need to be heard. You are changing the face of lung cancer, and we are grateful.
Here’s to Lizzie and Kayla, two brave young women who changed the face of lung cancer through sharing themselves, their stories, and fundraising. They knew the importance of sharing their story and the importance of raising funds for research. They were also both lovely people, kind and encouraging, loving and inspiring, deeply missed. What an honour to have known them.
Cheers to all those who join online lung cancer communities, who authentically contribute and genuinely care. That is another kind of brave and important story sharing! Online communities are powerful for support and information, and also fundraising.
I’m involved in several online groups, including one international ALK+ group. ALK is a rare kind of lung cancer. This group has almost 2000 members, and held its second annual summit this past August in Atlanta. Thanks to a generous family, I was able to go and meet some of my ALK family in person, and what a celebration that was! This group is so supportive and encouraging, and tremendously knowledgable. We heard from world leading oncologists at the summit, because this group highly values research. We know our lives may depend on being informed so we can gain access to clinical trials and latest treatment options. We know very well that research is life, and we fundraise for research into our particular kind of lung cancer (as do people with other kinds of cancers). The ALK+ group raised $500,000 USD last month alone, and this month they have secured matching grants up to $200,000 USD.
Research matters. People matter. More research means more survivors. Money = research = life.
Here’s to all who bravely share lung cancer stories! Here’s to all who tell them so well. Thank you. Stories matter.
Thank you for giving generously, for supporting lung cancer research, for opening pathways for more people to live longer and better!
To celebrate stories and survivorship, please give generously to lung cancer research!
All it takes is two. Put two lung cancer survivors together and anything could happen! Get three together and it could be a support group!
There’s nothing like meeting someone you really connect with! It has happened time and time again, the spark, the recognition that someone else gets it, they understand your experience, and they care.
Two survivors together is powerful. There is strength in numbers, and two is enough. Get three and now we’re really cooking! There is no telling what could happen!
Two survivors plus a social worker or psychologist, or any third who is willing to lead, and all kinds of good could come of that. Just ask Alyson and Christine about what happened in Winnipeg less than a year ago. The lung cancer support group they started in Spring of 2019 stood up and clapped with gratitude for them. They just celebrated the holidays with a party this week! What a difference this support group is making! Way to go, Alyson, Christine, Mike, Kelly and team!
It may seem hard to start a support group, but it’s not too hard. People do it all the time. Support groups are best practices and they do good for people around the world. It’s not too hard to start one. There are courses in leading groups, lots of books, experienced leaders, and other resources to learn from. Right in cancer centres all over the world, there are loads of trained, caring people working in psychosocial oncology. It’s not too late to learn. Alyson and Christine asked a lot of questions when they were getting started, and a social worker here in Ottawa helped them connect with teammates in Winnipeg. Reach out! Ask questions! Support groups are best practices, and lots of people could benefit if we had more of them.
We’re very grateful for the lung cancer support group in Ottawa. It was started (in October 2017) by Social Worker Diane Manii and a team here in Ottawa, with Lung Cancer Canada and the Ottawa Regional Cancer Foundation. It continues with their support and the support of The Ottawa Hospital. There is much generosity toward the Ottawa support group, and strong support within the group. The group has also started reaching out at the Cancer Centre with monthly hope tables (since August 2018) which are greatly appreciated. The group participated in Ottawa Race Weekend (#LungCancerStrong) in May 2019, raising funds as “Lung Cancer Team Canada” for Lung Cancer Canada, and growing numbers are participating in political advocacy for lung cancer.
I’m very grateful for the women and men I’ve met through our Ottawa support group. They are silver linings of lung cancer.
If you don’t have a support group and you would like to explore starting one, please start looking around and asking questions. You may be in an area where it may not look like there are enough people or resources for a lung cancer specific group, but don’t let that discourage you. People are willing to help; reach out!
Once you have three, there’s no telling what you can do!
To celebrate support groups and survivorship, please give generously to lung cancer research!