Life

Getting our affairs in order

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I’ve heard people talk so comfortably about end of life matters, but it was never easy for me. With practice it’s been getting better.

My parents were both diagnosed with cancer within one week when I was 20, and within a year they had both died. Those were the first and second funerals I went to. Before that time I did not know much about grief except what I had read in books. That was an incredibly difficult season and grief continues, though not like back then. I’m working to prepare my children for life after my death, even though we are holding onto hope that I will live for many more years. We have had some really good and important conversations.

It’s always wise to make sure our will is updated and the other important things are communicated and ordered appropriately, but at times like this we feel the need to be sure all the more. It’s generally best to involve a lawyer. Specifics vary from place to place, but in Ontario Canada, the main pieces are: will, power of attorney for personal care, power of attorney for property.

There are many resources in communities and online to help.

For some time I’ve been connected with Hospice Care Ottawa, and recently have started taking advantage of some of their services. I’ve been meeting with a grief counsellor regularly since September because I was feeling the weight of many griefs, and this has been very helpful. Lung cancer advocacy can be a heavy load. Those who are uplifting and supportive matter so much. They can make a huge difference.

Some of Hospice Care Ottawa’s volunteers participated in an advanced care zoom meeting, which was filled with good information and resources. They invited us to play a “Go Wish Game”, where you choose your top 3 out of 36 wish statements relating to end of life care. It’s challenging to choose only three, but the point of this game is to get people thinking and talking, and that it certainly did. Many others on the call have also found that having these kinds of conversations with family and friends tended to turn out a lot better than they were expecting. There are lots of good resources and great conversations to be had.

Part of a handout from the advanced care zoom meeting

My word for 2022 is “rejoice”, chosen before 2022, before my health took a turn. It’s surprising how much joy there can be, even in conversations about end of life issues. It matters to me that people feel freedom to celebrate, not just mourn. We’ve spoken about grief many times. We acknowledge there is and there will be sadness along with a whole lot of different emotions, but there can also be joy and laughter. My desire is that in addition to sadness people will remember and celebrate the good and happy times.

My beloved three children mean so much to me. They have been living with their Mom having lung cancer for over eight years. They were only 6, 10 and 12 at diagnosis. Now they are 15, 18 and 20. We are very thankful for advances in research that have been a big part of the story, keeping this stage four cancer survivor alive all these years. What a difference research and good medical care has made, along with the support of some amazing people!

Our advocacy has been largely about working to extend and improve the lives of people diagnosed with lung cancer or other kinds of cancer. We’ve worked hard to support people and elevate the value of people affected by lung cancer and the importance of research. It is still possible that I can live on chemotherapy long enough for another discovery to be made and become accessible for me. This is what we’ve been hoping for.

This is how we’ve been living for the past eight years since diagnosis. Seven different lines of treatment: four different targeted therapies, radiation, two sets of chemotherapy … when one treatment option failed another one has always become available, sometimes just in the nick of time. Great timing of accessibility has helped keep me and many others alive. This rollercoaster ride has kept me and so many others going, and we continue to hold onto hope.

We celebrate researchers, fundraisers, primary care physicians, counsellors, storytellers, social workers, advocates, nurses, surgeons, administrators, oncologists and anyone who works as a good team member to help extend and improve the lives of people affected by lung cancer. These good teammates need to be uplifted and encouraged because the load can be heavy, the work can be hard. We are so grateful for those who encourage and uplift teammates. Together we can be a good team. We can drive change.

#AdvocacyMatters

#AccessMatters

#ResearchMatters

#ChooseHope

Port successfully inserted

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A quick note to let you know that I’m home from my morning appointment: the port was successfully inserted earlier today. The clerk, nurses and doctor were all very kind and competent. One nurse successfully inserted an IV line in one try with virtually no pain. She also brought ice chips afterwards. 🙂 Very thankful!

Before surgery

The procedure itself was pain-free and easy (for the patient). Before arriving at the hospital I felt a bit nervous, but meeting some of the people on the team and learning more about what was going to happen quickly made me feel a whole lot better. I put myself into their competent hands and relaxed even before they gave the drugs that help the body relax. Big thank you to everyone who prayed, sent kind words and/or thoughts.

After surgery

I don’t feel any pain but do feel a bit tired. The plan is to rest today.

Below are some pictures from the passenger seat of a moving car on the ride home: Canada’s Central Experimental Farm (Ornamental Gardens), the Dominion Arboretum, and the Rideau Canal Skateway (Dow’s Lake) – World’s Largest Skating Rink and UNESCO World Heritage Site. What a beautiful, sunny day! Very grateful!

the ride home

#thankful #joyful #life

Hoping and Cheering for Much More Research

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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!

Seven years – Wow!

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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!

  • My amazing oncologist, Dr. Garth Nicholas

thank you

Three More Reasons to Hold onto Hope

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In a challenging season, there are opportunities to be seized. When life is hard, there is still good going on. Here are three more reasons to hold onto hope…

3) Canadian Cancer Society/Canadian Institutes of Health Research Cancer Survivorship Team Grants

Last summer Jennifer Wilson, director of research operations for the Canadian Cancer Society, asked me to serve with some awesome review panelists to help decide which survivorship team research projects would receive funding. The $10 million competition, CCS/CIHR Cancer Survivorship Team Grants, had the goal of improving health outcomes for cancer survivors. We anticipated that at least four teams would be funded, but then just before the announcement could be made, COVID-19 struck.

Everything changed.

Prior to COVID-19, this $10M competition would have been the largest investment in cancer survivorship research ever made in Canada at one time.

The recipients were announced this month. During the delay brought on by COVID-19, additional partner funds were secured from the Alberta Cancer Foundation and McMaster University, which enabled SIX grants!!

Jennifer Wilson and team worked hard during a global pandemic to make the largest investment in cancer survivorship research even larger! Way to go team! Here is the announcement

  • Fellow panelist Dr. Vicky Forster and I at the Toronto CCS offices Autumn 2019

2) Great news! The US FDA approved SEVEN new lung cancer treatments in May 2020 (during COVID-19)!!

Tabrecta – Capmatinib (METex14)

Retevmo – Selpercatinib (RET)

Opdivo – Nivolumab + Yervoy – Ipilimumab

Tecentriq – Atezolizumab (first line)

Alunbrig – Brigatinib (ALK)

Opdivo – Nivolumab + Yervoy – Ipilimumab + chemo

Ramucirumab – Cyramza + erlotinib – Tarceva (EGFRex19 or ex21)

WOW! WOW!! WOW!!!

What tremendous achievement from multiple teams! Time to celebrate!! #ResearchMatters

1) What a feeling!

This is insignificant in comparison, but I am also thankful because I have feeling in my hands this evening.

Neuropathy (nerve damage / dysfunction) is a common side effect from some cancer treatments. My hands have been generally numb or in significant pain (usually burning, stabbing or electrical) for the past six and a half years of survivorship. I try to keep perspective, since these are side effects of drugs that are keeping me alive.

Tonight I was making biscuits, and as I rubbed my hands together to remove bits of dough, I realised that I could feel the palms of my hands. They felt almost normal, and they still do, a few hours later. Happiness and gratitude! So thankful to be alive six and a half years after diagnosis!! My kids were 6, 10 & 12 at diagnosis, and now they are 13, 17 & 19. That means so much! I’m so glad I get to be here with them. So very grateful!

The costs of survivorship are real. New and improved treatment options mean that (in general) people are living longer and better post diagnosis. Survival rates vary significantly, but about two thirds of people will live at least five years after a cancer diagnosis. This means that over one million Canadians are now living with cancer, and that number is expected to rise dramatically in the next twenty years. (Canadian Cancer Society statistics)

Research matters, to improve both quantity and quality of life.

Research brings hope.

Hold onto hope.

7 Swans a-swimming – Silver Linings

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Lung cancer is hard, but if you’re open you can meet some outstanding people that you wouldn’t have otherwise. There is grief, to be sure, but it is paired with the good gift and honour of knowing amazing people, the graceful swans or “silver linings of lung cancer”. So grateful! Research is helping more of us live longer. Please donate so more awesome people can live longer!

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

Why I work hard as a lung cancer advocate:

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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. 

#ResearchMatters 

Celebrating Life!

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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!

#MoreResearchMoreSurvivors #ChooseHOPE

The difference lung cancer research makes

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Right in this moment, today friends, I have to tell you that I am overflowing with joy and a sense of wonder and well-being. Maybe that sounds a little crazy to you because of the lung cancer, but it’s true.

I am grateful beyond words for so much good in my life. The best is that I am loved, by God, by so many people, including my sweet daughter who makes me little “I love you” notes all the time. She is filled with love and joy, and I cherish her. I am so thankful to be here with her and with you all.

We were made to love and be loved. Love gives us a reason to live. I’m thankful to be alive so I can love, be loved, and make a difference for others.

And I am alive, more than five years after my diagnosis, I am alive! In fact, I feel better than I did a year ago. I keep feeling better and better. I can breathe well, most of the time. I can move my body in ways I haven’t since this whole thing began. Cancer, chemo and meds weakened me, zapped my energy, and made my body stiff and sore. But I’m regaining muscle strength and flexibility, which is such a good gift. For the past five years, I’ve pushed through the pain, telling myself, “Use it or lose it!” I know what it means to push through pain, being a former national athlete and a mom who delivered two of my babies without pain relief. (Did I mention the second one weighed almost 11 pounds?)

I’m feeling better, more able to move, in much less pain, with much more energy, and I am rejoicing! What a difference lung cancer research makes!

This new lung cancer med is doing more than keeping me alive. It’s helping me to live! I give thanks for lung cancer research! Let’s have more of it!