Support

Living on Oxygen: tips that have helped me

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A few people have asked for advice about living on oxygen, including someone on the West Coast who I had a good conversation with yesterday. Seems like a good idea to share some tips that have helped me and to make it clear again that I have no medical training. These tips may not be suitable for you, so (as always) please talk with your own care team and bring your list of questions to them so they can answer with good advice specific to your situation.

Sending out love to everyone who is on oxygen, or considering it. Being on oxygen can be challenging, and I hope this post may make it a little better, even in some small way. We are never alone.

It is almost exactly six months since I went to emergency and stayed in the hospital for several days due to shortness of breath. I’ve been on oxygen ever since, 24-7. My oxygen rate requirement increased significantly over months, and more recently it has decreased a bit. This decrease is a real relief, since I was up to 10 on a machine that only goes to 10. I have a terrific respiratory therapist with the oxygen equipment rental company, and she brought over a second machine in case I needed to go above 10. These two machines can be linked together and go up to about 15 Lpm of oxygen. Very thankful I have not had to do this so far.

Being on oxygen can be scary and shocking. Some people have said they want to “tough it out” and avoid using oxygen, but it’s there to help us breathe better and if our team recommends it then it’s definitely worth trying. For me and for many others it made such a world of difference. I was having a hard time walking from one room to the next in my small home prior to going on oxygen. Even with it, I still need to move slowly. Walking slowly is challenging for me, and my kids will tell you that, as will anyone who was within hearing distance of us today while walking up and down the street, my youngest reminded me to slow down SO MANY times, out of love and concern. I need to be reminded. I get excited and tend to speed up. Oxygen is extending my life, and right now there is no option for me. I sleep with it, shower with it, and keep it going all the time.

When suffering from shortness of breath, it’s important to relax and take long, deep breaths. In through the nose and out through the mouth. This might feel like it’s very difficult, but it really matters. This is the way to change back to “normal” breathing, and it’s doable. Leaning forward in one’s chair, or on a counter or chair back if standing, can help also, as can sitting up straight and putting one’s elbows out so there is more room for the lungs to expand. Some people find it helpful to put a fan on. It seems counter-intuitive to slow down the breathing, but long deep breaths is important, and relaxing to make this possible is important. Ask your team what is best for you.

I’m using a machine that sucks in air from the room and shoots out oxygen through tubing which goes into my nose through a nasal cannula. This can be drying for the nose and throat, especially at higher flow rates, so Secaris nasal lubricating gel was recommended, applied using a very small amount on a q-tip. The directions say every 4 hours or as needed. I’ve been using it for almost six months and haven’t even used half of my 30g tube, but I don’t put it on as often as I maybe should. Perhaps this is too much information, but my nose bleeds frequently, especially in the dry weather and on higher oxygen levels. It is important to keep the airway clear so the oxygen can get through easily. (Also important to not use oily / greasy moisturizers near the tubing.)

Things can go wrong, and when one is relying on an oxygen machine to stay alive, it’s important to think these possibilities through and have plans in place, just in case. If my machine stops, a loud alarm sounds. This has happened a couple of times, and I’ve also accidentally pulled the cord from the wall (usually by trying to go too far from the machine, especially when the cord gets tangled up). Obviously, it has worked out just fine every time. One machine needed to be replaced, and a representative from the rental company came over and took care of that promptly. Also, we had an electrical problem in our home which required calling an electrician to get it fixed. He was great and had the problem solved within a couple of hours of calling him.

It’s important to regularly check for and straighten out kinks in the tubing that can decrease oxygen flow, including twists in the tubing by one’s neck. I check this several times each day, and always before going to bed. I monitor my oxygen levels (%SpO2) using a little device that fits on the finger, which also shows the heart rate. If you have one, you can ask your respiratory therapist to check for how accurate it is. I’m supposed to keep my oxygen levels between 91-95.

I also have oxygen tanks, with weekly deliveries to replace empty with full tanks (and bring replacement tubing etc.). Obviously, it’s important to stay on top of this. We make sure that there is always an extra tank nearby (ideally in the same room) in case of emergencies so we can switch the tubing from the machine to the tank for seamless oxygen supply. My kids are awesome about this and come running if the machine sounds. I use the tanks when out walking or going on trips to the hospital for example.

Speaking of hospital trips, when at appointments I use the hospital oxygen, whether a big tank on a wheelchair or being plugged into the oxygen in the wall by a hospital bed. It’s important to check the hospital tank gage levels because, even though they are so big, they can empty out too. Twice now I’ve emptied out all the oxygen from a large hospital oxygen tank. Obviously all worked out fine, but it’s important to have emergency plans in place and to ask for help when we need it. Very grateful for the people who’ve come rushing to help. I now always also carry my own tank for a back-up. It’s a bit awkward, but worth it. The rental company included a bag for the knee-high sized tanks so I put it on my lap in the wheelchair.

The thought of being on oxygen can bring lots of feelings, but if our team recommends it then it could really make a terrific difference for us, extending our lives potentially for months or even years. Ideally our team will figure out the cause and find a solution to improve our health, but until then we can benefit so much from the support of oxygen. Please make a list of your questions and talk with your team about them. They will have the answers that are appropriate for your best care. You can ask for a palliative care team for symptom management (studies show that people who have a palliative care team live longer and better – it’s not just for end of life care). You can also ask for a respiratory therapist and/or a physical therapist. Lots of people benefit from oxygen. We are never alone.

By the way, the dog seems to love oxygen tubing and is typically seen lying on it, often with his enormous head on it and/or his paws wrapped around it. As massive as he is, he has not decreased the oxygen flow, nor has he ever pulled out the electrical cord from the wall. Who’s a good dog!

#hope

#love

#oxygen

#life

#dog

Celebrating Victories

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How much it matters to celebrate even the small victories! Especially during tough times, we celebrate progress, we celebrate little wins, we celebrate each step on the path toward our goal.

Many of you know I’ve been working on walking more and it has been challenging. Ever since I was in hospital for shortness of breath in February, and even before then, shortness of breath has at times made it challenging to walk even a couple of steps. I’ve set out chairs in my home to help me make it from room to room. Our home is not large, but there were times I could not walk to the next room without a rest to let my blood oxygen levels rise – even while on oxygen.

I walked in the house with oxygen very slowly, and aimed for a six minute walk each day initially. Often I had to rest more than once during the six minute walks. Eventually the length of walks could increase with fewer rests. The whole time, the goal was to keep my blood oxygen level between 91 and 95%. Often it would dip way down in the 80’s very suddenly. Sometimes even to the low 70’s. Not good.

My treatment breaks seem to be doing good for this body so far, and we are very grateful and quite excited about this – about being alive. To be real, it seemed that I was very close to death for a couple of months. Quite a few people have said they thought so, including my palliative care doctor.

I’m doing better in general, and even on lower oxygen levels in recent days. So very thankful!

I’ve been walking up and down on the street for a few months, with a walker or carrying my oxygen tank, or pulling it with a little cart. I’ve worked on lengthening these walks, and have been able to walk to the end of the street and back most days recently.

Yesterday, with the support and encouragement of my kids, we walked around the block together. Two of them were with me, and they said (if needed) one could run back and get my walker while the other stayed with me. One carried my oxygen tank and the other helped watch my oxygen monitor. Together we made it all the way around the block. First time in over six months!

Those of you who know where I live will tell you it’s not a long distance, not a big block. We still celebrate small victories, and this one felt really big. You are invited to celebrate together with us! I was tired today, and just walked up and down the street this evening, but yesterday, together we proved that I am able to walk all the way around the block. Gosh it felt good!

We don’t have cures for lung cancer the way we would like yet, but more and more treatments are being developed and getting approved. We celebrate the small victories on the path to cures.

One of my doctors said they don’t understand why I’m doing so well on this treatment break. There is so much to learn about cancer and treatments, and people’s responses to treatment. Did my body kick into gear and start fighting off the cancer? That was this doctor’s theory, based on over 20 years experience with people affected by different kinds of cancers. I don’t know why my scans are looking better and I’m feeling better, but I’m giving thanks for this beautiful good gift of extended life.

Here’s a big shout out to those who speak encouragement into my life. You make a world of difference. Thank you from the bottom of my heart. Cheers to you! You are helping to keep me going. Encouragement and support really matter.

Cheers to the researchers, doctors and teams who are working for better, longer lives for people affected by cancer! I know for a fact that doctors are cheering for their patients and very happy when we do better. When you get the opportunity, please say encouraging words and thanks to people who encourage and care for people. Please support and encourage and thank those who research, who work very hard for small victories, with hope for effective treatments and cures. So much gratitude and hope!

Those of you who are following this story and cheering for health improvements … please join in and celebrate this victory!

#gratitude

#hope

#treatmentbreak

#chemo

#targetedtherapy

#cancer

#lungcancer

Virtual / Reality

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We have a carport and it’s a great place for visits most of the year. A dear friend from High School ordered a heater for us and had it delivered shortly after a chilly visit last Fall, and that has extended the carport visiting season. So grateful!

It’s very special to be able to meet with people in person, and this summer quite a few friends are coming to town and making time for carport visits. Yesterday a childhood friend (we used to play piano duets together) came from the Seattle area and her Mom (who still lives in the same home with the same phone number (which I and so many others still remember)) came to visit. Such a treat! It’s so good to see people in person, even from 6 feet apart outside. In my opinion, it’s better in person than at a distance. Better in reality than virtually, in my opinion.

Don’t get me wrong, virtually is good, and in some circumstances it can open doors and provide opportunities that would not otherwise be possible. This is one of the silver linings of COVID and don’t get me wrong, I am grateful. It’s so good to meet “face to face” virtually when it’s too challenging (for a potential variety of reasons) to really meet face to face. There are good reasons for both. There is a season for everything. So grateful for a variety of options.

This is one of the reasons I’m such a fan of and advocate for CRAFT, 3CTN’s framework to make clinical trials more accessible for Canadians living in remote and rural parts of our geographically huge country. So important! 

Here’s a short video about CRAFT with some great quotes from a few people which was made over a year ago. CRAFT has now been rolled out and is serving people at several locations.

Zoom and other similar platforms have enabled many of us to speak at international conferences and other events the past couple of years. I’ve spoken at so many virtually, and we recognize the upside of not having to travel and spend time away. This has been a good gift which has also been a real difference maker for many of us.

Speaking personally, these visual platforms have also transformed much of my patient research advocacy in other ways. I used to have so many phone call meetings prior to COVID, and some of them with quite a large number of people. Initially I hadn’t met all the researchers in person and I did not always recognize all the voices. Sometimes some of the people did not introduce themselves when they started speaking and it could be challenging to figure out which person (from which place) was speaking. It’s so much easier with platforms that can show faces and even list their names. So much easier to get to know people and be better able to contextualize their comments. So  much better for community building than a mere large group phone call. So grateful for this!

In recent months, many members of the lung cancer community and other friends have sent gift certificates for our family to order food in. It means so much to receive this support that comes with love and appreciation. One ordered pizza for us, several have brought food, and many friends including our church community has brought much food and sent food in various ways as well. It’s such a treat and very much appreciated. Twice people have sent fruit bouquets which are so delicious, and so many other yummy things have arrived at our door – too many to name, and received with tremendous appreciation whether sweet or savoury. Thank you!

I’m very grateful for local friends who have done things this week – again, too many to name – like offer to pick up a walker for me, or regularly walk our dog. The reality is that there are times when we need real physical, local support. So many people here in Ottawa have offered and/or given support when needed, for example, rides to appointments, picking up groceries etc. Where would we be without our local people?

As much as we appreciate the virtual reality, we recognize there are some things that obviously cannot be done from a distance. Even for those who are part of strong virtual support groups, it seems obvious that it’s important to make sure we are also cultivating relationships with people in our own geographic community. We never know when we might need local support.

Please let me say again that we are incredibly grateful for the reality of this local support as well as the support from a distance.

#love

#hope

#support

August 1 is World Lung Cancer Day. What is your cancer center doing to celebrate?

Recent Health Updates: Exercise

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I had a PET scan, and appointments with my family doctor, thoracic surgeon/respirologist (who may do a biopsy) and oncologist recently. Good news all around! (Which may not be 100% precisely accurately remembered / communicated here.)

First of all, you may already know this bit of background I’ve been on Lorlatinib (a targeted therapy / cancer-fighting pill) since 2018. In 2020 we noticed progression so we radiation on those pesky spots, but that didn’t work as well as we’d hoped it would. Our next plan (still in 2020) was to keep the Lorlatinib and add Pemetrexed (IV chemo). This continued for 24 cycles, but in February 2022 I was admitted to hospital with shortness of breath of unknown causes. In Spring 2022 the experts determined that I was doing very poorly, likely due to the Pemetrexed, and stopped IV chemo for a treatment break. I continued on the Lorlatinib, but after an appointment with my oncologist very recently, we have decided to take a brief treatment break to see how I do on no treatment for a little while. Please note: these are just treatment breaks. 

My family doc has agreed to look into what may be causing the shortness of breath, since it’s not necessarily cancer, which is great news! My oncologist also is referring me to a specialist who may be able to help with this.

The thoracic surgeon / respirologist said the PET scan revealed there is a small spot which may be measurable disease that he can easily biopsy if needed for the clinical trial. He also said that shortness of breath is natural since my lungs have much smaller capacity because of the scarring from cancer, the treatments, pneumonias, etc. This could have been discouraging, however when I asked what I could do to maximize what I’ve got and live as well and as long as possible, his answer was inspiring! This expert said that exercise makes a difference. Exercise is helpful – even when suffering from shortness of breath and in need of oxygen – and will influence all aspects of health. It doesn’t have to be at the pace that we might think. He encourages, for example, walking at a slow pace where we can still have a conversation with a friend and breathe. It matters that we keep pushing ourselves, at a slow pace, and it will help us to live longer and better.

Survivorship can be challenging. We need to remember that we are stronger than we think we are and by pushing ourselves a little, at a slow pace, and asking our friends to support and encourage us, we can potentially live longer and better.

Very grateful for Andrea Redway, for coming with me to the thoracic surgeon and also taking notes! (Everyone needs support and an advocate.) Still grateful for the cake made and brought by the awesome Vanneste sisters back in 2017 for our outreach table for World Lung Day. What a great surprise and generous gift that was! August 1 is World Lung Cancer Day. What is your Cancer Centre doing to celebrate?

#hope

Also very grateful for the ALK group who hosted a zoom call recently with people from Nuvalent, the biotech company developing the drug that I’m hoping to gain access to, potentially through upcoming clinical trial later this year. (Very grateful for Nuvalent.) One of the things I love about this trial is that the team has worked very hard to make it as accessible as possible to as many people as possible. So, for example, you can have had multiple prior lines of treatment. You could be 107 years old. You could have ALK cancer, but not specifically ALK lung cancer – even rarer. You can even live in Ottawa Canada.

(Note: most pictures here are pre-COVID.)

Ottawa Lung Cancer Support Group

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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!

Ottawa Lung Cancer Support Group, March 25, 2022, 4:09pm EDT

Wouldn’t it be good if everyone affected by cancer had a support group to be part of?

The Ottawa Lung Cancer Support Group welcomes people to the cancer centre through monthly (pre-COVID) outreach tables.

Queen’s Park, Toronto, Ontario, Canada
Federal cancer advocacy, The Parliament Buildings, Ottawa, Canada
Federal cancer advocacy, Ottawa Canada
Federal cancer advocacy, Ottawa Canada
Federal cancer advocacy, Ottawa Canada
Cancer advocates, Ottawa City Hall
En route to advocate at Queen’s Park (site of the Ontario Legislative Building, home to the Legislative Assembly of Ontario) in Toronto
Cancer advocates in front of the Parliament Buildings, Ottawa Canada
The Parliament Buildings
Federal cancer advocacy, The Parliament Buildings, Ottawa Canada
Federal cancer advocacy, The Parliament Buildings, Ottawa Canada
The Ottawa Lung Cancer Support Group advocating to municipal, provincial and federal politicians and other influencers.

The Ottawa Lung Cancer Support Group on the front page of the newspaper Monday October 30, 2017

The Ottawa Lung Cancer Support Group travelled to present at the International Psychosocial Oncology World Congress 2019

The Ottawa Lung Cancer Support Group together with family & friends declared #LungCancerStrong, National Capital Race Weekend 2019

Jellybeans represent people diagnosed with lung cancer. More funding = more research = more survivors. Advocacy matters!

#ResearchMatters

The Ottawa Lung Cancer Support Group invited family and friends to make #TheWhiteRibbonProject ribbons August 9, 2021

Quick update

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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!

My Roller Coaster Adventure Ride

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Well, that bump was bigger than expected! Sadly the radiation in October did not do the cancer-crushing work we were hoping it would. My recovery wasn’t going as well as anticipated, and tests showed I had pneumonia as well as cancer growth. My oncologist and I discussed chemotherapy, which is the only treatment option available to me currently.

My oncologist and I both reached out to some Canadian lung cancer researchers to investigate whether there might be a clinical trial suitable for me available in Canada, either now or in the near future. I was disappointed but not surprised to learn that there is nothing on the horizon.

There are some possibilities in the US, so I applied for the “ALK Second Opinion Program”, which is funded by some generous people affected by the same kind of lung cancer that is affecting me (ALK). I learned within a couple of hours that my application was accepted, so the program will pay for me to have an online appointment with one of the top ALK researchers in the world. I have met most of the doctors on their list, and it is a tough decision because they are not only brilliant but also very kind. I plan to go with the Boston team because, although Dr. Alice Shaw is not spending much time seeing patients there now, they may have a clinical trial appropriate for me in future, and Boston is much easier to travel to than Nashville or Colorado. My oncologist has very kindly offered to participate in the online appointment with me, and one of my dear ALK sisters has offered to walk with me through this process. I’m very grateful for the support.

I had my first chemo of 2020 on Monday November 30. It hit pretty hard, and I had to go to emergency with a fever which turned out to be another round of pneumonia. Antibiotics helped a lot, and I’m feeling much better. I’m still very tired, coughing a fair bit, and having problems swallowing (since August). Thankfully there is soup, and I’m very grateful for friends who have brought so much soup!! It’s great to have different kinds of soup that I don’t typically make, and it’s so nice to not have to make it myself!

My next chemo is Monday December 21, which will get me through the holidays, as my awesome oncologist noted. The following one is scheduled for January 11. Apart from the blood tests on the Fridays before, I’m hoping to not need any additional hospital visits! 😀

This is quite a change from the targeted therapy lifestyle, which tends to be much more smooth sailing, with fewer appointments and blood tests. I’m so very grateful for my many years of reasonably good health while living with stage four lung cancer. I never expected to live seven years past my diagnosis, and now I have much more hope than I did at diagnosis. I am hopeful for new treatment options. I hope that the chemo I’m on now will work more effectively with fewer side effects than the older harsher chemo I took in 2013-14. I hope researchers will develop new treatment options that will be available just when I need them. That has been my roller coaster adventure ride with lung cancer these seven years, and I hope for more! Oh yes I do!!

More than that, I hope for more research to extend the lives of many more people affected by lung cancer, because there are so many of us and we all want life and need hope. So if you know any lung cancer researchers, please thank them for the good work they are doing and encourage them to keep up the good work with diligence and urgency. So many of us are counting on them!

I’ve worked hard to keep doing light weights, stretching and walking through the Fall. My daily step count has fallen below my usual 9000-10,000, but I haven’t given up hope!

So grateful for friends, for so many delicious soups (and other yummy things!), and for so many calls and messages. This has really sustained me and helped keep me buoyed up.

I don’t talk about my faith a lot, and I would never want anyone to feel like I’m pushing Christianity on anyone. I want to be clear, please stop reading if you are feeling offended. My relationship with God means so much to me, and keeps me going. God is good all the time, and I am grateful for the love of God poured out through Jesus, and the ever-present comfort of the Holy Spirit. It’s the love of Jesus that motivates my advocacy, and any good I do is because of God working through me.

#hope

Four Down, One to Go

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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.)

Research and Hope

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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.)

Awesome STARS advocates at the World Conference on Lung Cancer, Barcelona, September 2019.

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.

Some of our outreach table team members chatting with Dr. Paul Wheatley-Price in January. (That day I spent a lot of time talking with Ottawa Hospital employees as well as patients!)

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?

I’m doing a little art these days when I can set aside the time.

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.

My 13yo made this cake for a little Leap Year Day party we held with some good friends!

3 French Hens: Support Groups

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12 Days of Giving to Lung Cancer Clinical Trials

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!

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 #ThankYou