“You’re not alone”

Having “the conversation” with people you love is one of the hardest things after a cancer diagnosis. Three and a half years later, I clearly recall some details of those painful conversations when I told my friends or family that I had cancer – serious cancer.

The anticipation was horrible. The conversations were difficult, but there were many moments of love and generosity outpoured, both during the conversation as well as afterwards. So much grace that I had not anticipated!

I remember telling my small group. Our group has met weekly for several years to study the Bible and pray together. We had grown to love and trust each other, and these were friends I knew I could lean on. I knew they would be there for me, but I had no idea how much.

“You’re not alone.” The first words I remember hearing from my small group when I told them my sad news. Many more words of love, support and solidarity have followed, but these words echo out across the years. These words echo when my friends pass the tissues and cry with me, when they gather around and pray for me, when they bring me food and organize an army of beautifully generous meal preparers, when they get on hands and knees to clean my house, when they sit with me and listen, when they take my kids out for treats and listen, when they have our family over for an evening of fun, …

It’s not good to be alone. We need each other. We need people to laugh with and cry with. We were made for community.

The gifts that I have received in vulnerable times mean so much, and I am grateful beyond words for the goodness that friends, acquaintances, and even strangers have poured out over us since my diagnosis. God’s presence, faithful love and abundance is always with us – so many passages of Scripture remind us! We have felt embraced by love and generosity … never alone!

Another good gift I have received is the community of lung cancer patients and caregivers. People who’ve had similar conversations with their family and friends. People whose conversations have not always gone well.

I’m grateful for so many of these fine folks I’ve been privileged to get to know online through patient forums. These groups are a good source of support and information for me. I’ve grown to love these people and to think of them as my tribe!

And recently I got to meet some in person through LUNGevity’s Hope Summit in Washington DC.

I left Ottawa one cold and foggy morning in April and arrived in a completely different climate zone. Spring had sprung in DC. I had already missed the cherry blossom festival, but there remained much beauty to behold!

The Patients’ & Caregivers’ Summits began on Friday night, with an Advocates meeting for a number of us keeners on Friday. I arrived on Thursday morning with the whole day stretched out before me. I hadn’t ever met anyone from LUNGevity before, and I was a bit nervous about being there all by myself. I checked into the hotel, right by the beautiful Key Bridge (which crosses the Potomac from Rosslyn Virginia into Georgetown). I was just about to head out the door to find my way to some of the Monuments and Museums in DC, but got distracted by people arriving in the lobby.

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View of the beautiful Key Bridge & Georgetown from the top floor of the hotel

I couldn’t help but overhear one of the conversations … it sounded vaguely like it could be between two LUNGevity friends who hadn’t seen each other since last year’s Patient Summit! I approached and asked if by any chance they were part of LUNGevity, and that is how I met my first two LUNGevity friends, Ivy and Don! They were so friendly and invited me to join them and others for a walk across the Key Bridge to Georgetown for lunch! It was pretty easy to choose getting to know them over sight-seeing!

I never did make it to any museums or monuments, but I have no regrets! I was privileged to spend a lot of time meeting new friends and walking back and forth multiple times across that bridge! No one was left behind … not even people with diminished lung capacity! ūüėČ

I learned more about advocacy and what it means to be an advocate or an activist. Thought-provoking! So many good conversations both as part of the summit and in the unscheduled moments!

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Chris Draft of the Draft Family Foundation: Inspiring Advocate!

So many exciting new advances in Lung Cancer treatments! So many resources! So much reason for hope!

One of the presenters was Dr. Ross Camidge, a well-known expert in my particular type of lung cancer. Late Saturday afternoon I sat beside him at an “Ask the Expert” table discussion. So many questions I could have asked him, but my brain was chock-full of information so we mostly chatted about cross-cultural differences (he’s from the UK and works at the University of Colorado Cancer Center), and he told me funny stories! ūüôā

I came away encouraged and inspired! I came home with ideas and direction! I’m so grateful for all the LUNGevity folks who welcomed me, and for the anonymous donor who made it possible for me to be there. Thank you!

But mostly I came away with a strong sense that I am not alone! There are so many others walking similar paths, and I am grateful for the opportunity to get to know some more of my tribe! I’m grateful to be able to walk across that beautiful bridge! I’m grateful to have met these beautiful people who are walking a similar journey to me – patients and caregivers and others who support and advocate powerfully!

I hope to tell you more in future posts. There is always so much to say! ūüôā

Here’s some exciting news about next week: I’m participating in a webinar for Cancer Coaches on Monday afternoon, speaking about my clinical trial experience. This is my first webinar, and I’m grateful for this opportunity! Cancer coaches are a real gift, and they can help you with difficult conversations!

 

 

Holding Hands and Letting Go  

[This is an atypical post, a reflection I wrote yesterday afternoon¬†…]

The realization came as an epiphany while I was trying to squeeze my pregnant bulk behind the steering wheel, and wondering if that would be the last time I would drive before my first baby was born. ‚ÄúParenting,‚ÄĚ I heard myself say, ‚Äúis about letting go‚ÄĚ. These were my last days of constant companionship, when my small child would always be with me. He would one day soon travel through the birth canal as his first of many trips away from me.

Back when her big brothers were very little, they asked me at an evening prayer time if they could ask God for a baby sister. I said yes. Shortly after that, we learned we were expecting! Her name means, ‚ÄúThe Lord has heard our prayer‚ÄĚ, and we named her largely because of this prayer.

I remember walking with both boys to school when I was pregnant with their sister. Holding hands together with them, one on each side and my baby bump growing larger day by day. It seemed manageable with two hands and two sons, and I wondered how the shape of our family would change when our children outnumbered my hands!

She came rather smoothly one January day. By this time we were fairly experienced parents. We knew how things worked: you go to the hospital pregnant and you come home with a baby boy! When our daughter was delivered and the doctor invited my husband to declare whether the baby was a boy or girl, there were several moments of stunned silence … a girl? A girl! Joy and laughter!

Our girl who learned to walk and talk, cheered on by adoring brothers. We read stories to her and sang songs for her and always there were plenty of loving hands for holding!

In September of Grade One, I walked her to her new school, feeling the smallness of her beautiful hand in mine, cherishing these moments with my girl, wanting always to remember the feeling of this little hand in mine. When they get older they don’t always hold your hand … but for now I relished those walks to and from school with that sweet, soft hand in mine.

One afternoon during that First Week of School, I picked her up as usual, and as we set off together her precious hand slipped into mine. I was shocked at the unfamiliar feeling: what had happened to my child’s hands? They had suddenly changed! She had discovered the monkey bars and spent every moment of recess swinging on them, quickly toughening up those beautiful hands. Change can be good!

She still loves to swing and climb. I love the strength of her arms and shoulders, her courage and fierce determination. Her love is fierce and sweet and strong.

She began to notice and love a person she sees every week at church. Someone who does not talk with words but whose mouth is filled with laughter. Joy spills out all around him where his attendants carefully park his wheelchair. He is well-loved and appreciated, and Eliana has noticed this. Love for this man grew in her heart, and when we learned that he was suddenly very sick and would probably die soon, we were sad and prayed for peace and healing for him, then comfort for his family and friends and community. When we learned his funeral was Friday, she asked if she could go. We said yes. Thursday evening, the minister called, wondering if Eliana would sing at the funeral. She said yes.

This afternoon, I sat listening to my little girl sing, ‚ÄúPrecious Lord, Take My Hand‚ÄĚ. I saw her sing with poise and power. I watched her respond with humility and grace to hugs and words of thanks from Brian‚Äôs family and friends. I caught a glimpse, an epiphany, a powerful realization of what I did know but suddenly saw anew. The Lord has been holding her hand since long before I did, and will keep holding her, helping her, cheering her on, and growing her.

Looking intently…

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It’s been too long since my last post. I know this because so many of ¬†you dear folks have been asking how I’m doing. I apologize for causing you concern. I am grateful for your care, kind words and prayers. I’m not really sure why I haven’t posted in such a long time … part of the answer¬†is that I have been busy living life rather than¬†writing about it! I’ve jumped into some new hobbies which have held my limited focus. Part of my current¬†reality is decreased¬†discipline and increased forgetfulness, and not really feeling like spending much time on the computer.

But probably the deeper¬†reason I haven’t posted with my typical frequency is¬†because I have needed time to work through some cancer grief. Cancer attacks and steals too many beloved people, and some days that’s really, really hard. This winter has¬†been a hard season, but not without grace and joy and beauty. Sometimes we have to look intently¬†…

March¬†brought scans and good news from the oncologist: cancer is shrinking! Praise God! Each month a large box arrives by courier, free of charge, containing my supply of pills. Four in the morning and four in the evening. Each time with a high fat large snack or meal. No wonder people on this med tend to pack on the pounds! I am no exception, and¬†I am happy to be alive and fat, though many of my favourite clothes aren’t fitting. Alive! So much to be thankful for! We rejoice!

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I feel better than I have since before my diagnosis. I’m still tired and have various aches and pains and side effects, but so much better than the side effects of any of the other treatments! Praise God!

In March, our middle child went on an exchange to a small hamlet in Northern Canada. What a great opportunity for which we are very thankful! The youth from up North are scheduled to arrive here for six days next month! When we first signed him up, I told the group I wasn’t sure how much¬†my health would allow me to help. I am thrilled to say that by God’s grace I’ve been able to do my part, including baking several dozen cupcakes in February, and making art for a silent auction fundraiser.

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I hunkered down* through the last of the Winter, and threw myself into a variety of creative pursuits. I made three long scarves, numerous beaded jewelry items, and started painting for the first time since I was a kid. Painting became part of my Lenten pilgrimage, and I learned more about looking intently. I was pleased with the pictures I made, and had fun doing it! I found inspiration in the daily bird calendar, which is obvious if you look at my work! Here are just a few, starting with the Toucan which was my first ever:

*Hunkered Down is a reference to a Malcolm Guite poem that has been rolling around in my heart and mind this Winter season. You can read /hear¬†it by clicking on this link:¬†Malcolm Guite “Because We Hunkered Down” Feb. 2017

Here is my Easter 2017 picture:

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This next one was inspired by my son’s trip up North. I made it for the silent auction, but it was kind of hard to let it go! The words in the “footprints” are from “Dene Laws”, which he saw at the Northern school. The person¬†who won this item in the silent auction¬†was one of the trip leaders. He took photo’s which inspired me to make this art, so I’m really happy he has¬†it!

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I’m always eager to head out in search of Signs of Spring! What a gift to be able to be out walking and breathing (fairly) easily! I’ve enjoyed many walks with family and friends. So much beauty! So much joy! Grace abounds! Looking intently …

Before I forget to mention, I’m off in the morning to¬†Washington DC, for LUNGevity’s big Lung Cancer patient HOPE summit, which runs Fri. evening – Sun. I’m also attending the Advocate summit all day Friday. I’m looking forward to connecting with some excellent people and hoping to learn a lot! I’m thankful for the anonymous donor who made it possible for me to go, and I hope to honour that generous gift¬†and make a difference! Being away for four days is a huge step for me, and it will take loads of discipline to not overdo it! If I’m up for it, I may tweet about it #DCHOPE17, and possibly post on fb. I certainly plan to update my blog upon my return! ūüôā

Very often I am deeply moved by the care and compassion that dear people¬†show. I promise you: it makes a difference! It’s hard work, being a cancer patient. Thank you for helping our family¬†carry this load! You never know the full impact¬†of a kind word or deed. Look intently for signs of love and goodness, and know with certainty that grace abounds even beyond what we can imagine or see!¬†May you receive showers of blessing, and may you see flowering and fruitfulness resulting!

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2017: Grief and Hope

We’re grieving some disappointing news we received a couple of weeks ago.

My CT scan in January showed cancer. Ugh. This means the med I was on for almost two years is no longer working effectively.

Thankfully, this is not the end of the line: many new meds are being developed, and there were a couple of options for me to consider. The best option, we think, is a new drug which is only very recently available to certain cancer patients here in Canada. Good news that I fit the criteria. Good news that the timing worked out for me. Good news that the company agreed to release it to me on compassionate grounds. Good news that we don’t have to pay for it.

Yet, in the midst of all this good news … still the grief.

Naturally we hoped I’d have a longer run on Ceritinib. I had even started hoping that “cancer” would become a thing of the past, that we would turn the page and start a new chapter which didn’t include cancer. That in future there would be chapters which didn’t include daily meds, side effects, frequent appointments and tests. Maybe even one day cancer would be beaten! That day will come, but I don’t yet see signs of its coming.

The reality is that we don’t know the whole story. We can’t see the BIG¬†picture. We have no idea what the future holds.

Thankfully I got the tests I needed quickly. Thankfully my oncologist worked late to fill out forms requesting the new drug for me. Mercifully it came surprisingly quickly. Thankfully I’ve been taking it for a week now and things seem to be going fairly well.

In the midst of disappointment, I keep praying to have my eyes and ears open. I keep looking for reasons to give thanks. I keep trying to discipline myself to stay in the present and live each day faithfully.

It’s hard to write this update. I don’t want to have to share bad news. I know you don’t want to hear it. I was blindsided by this news, and it hit hard. Surprisingly hard. ¬†I’m still working through the grief. I started this post a few days ago, and I don’t even want to read it over to check my spelling & grammar. So I’m not going to! (I’m such a rebel!)

In the midst of this difficult news, there is good. There is hope.

Hope is the¬†theme I’m focussing on for 2017. I chose it¬†toward the end of 2016, and had no idea how much I would need it! One of the ways I am focussing on “Hope” is by regularly reading passages from the Bible which speak to this topic, and spending time reflecting and praying about them.

I recently read 1 Kings 19, which tells about the time¬†the prophet Elijah was exhausted and fearful since his life was in danger, and he met with the LORD God. The LORD asked him twice, “What are you doing here, Elijah?” It’s a beautiful encounter in which the powerful God whispers to Elijah. Elijah learns that the story is bigger than what he perceives, and that the LORD has a good plan which includes Elijah. It reminded me that the Living God knows my name and all about my situation. Here is a prayer I wrote in in response:

Lord, thank you that we can come to you with the whole story, as we know it. You invite us to speak, to tell it to you. You listen and care for us. You are powerful & show your power … and you are gentle & show your gentleness.

You are more powerful than our enemies. You know our name. You know our need. You tenderly care for us. You give us a role to play in your Great story. You gently open our eyes and ears to know that the story as we know it is not actually the whole story. Thank you.

(If you’re interested in reading this passage, you can find it here: http://bible.oremus.org. Search 1 Kings 19)

Cancer is not the whole story. Leaving the clinical trial and switching from Ceritinib to Alectinib right now is not necessarily all bad. There may be good in it that I can’t perceive. Certainly the side effects so far seem much easier to tolerate, and for that I am thankful!

I’m praying for courage to boldly step into God’s Great story.

Prayers, warm thoughts, and words of encouragement are always appreciated.

Here are some glimpses of love, light and goodness from the past couple of weeks:

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The hibiscus plant is blooming again (and again)!

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I managed to root jasmine and geranium last Fall, and they’re starting to bloom!

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My first lemons are looking luscious!

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Homemade heart-shaped biscuits with our broccoli soup last night!

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I set foot on the world’s longest skating rink¬†(wearing a cozy hat made by the sister of one of my favourite clinical trial nurses)!

 

In Ontario, cancer medications given in hospital (like IV chemotherapy) are provided free of charge, however cancer drugs that we take at home (like effective new pills) are often paid for by the patient. Sometimes they cost thousands of dollars per month. Many cancer patients face significant financial fragility, and should not have to pay for their treatment medication. The Canadian Cancer Society is making it easy to speak out against this unfair situation. If you are an Ontario resident, please consider taking action! Click here to contact your MPP about this important issue!

 

As 2017 quickly approaches…

I want to take just a few moments to thank you for your support, prayers, and encouragement.

Hard to believe it’s over three years since my diagnosis, and we are so very thankful that I’m still alive! In fact, my health is better in recent months¬†than it has been since before my diagnosis. We rejoice!

But my health is nowhere near what it was like before cancer, and this can be hard. The support of friends and family helps keep me going, helps me stay encouraged and hopeful! Thank you!

There have been so many beautiful moments this past year, and this is what I try to focus on, rather than the discouraging parts.

Thank you for standing with us, and for helping us to have hope!

May you know much joy, love, health and hope throughout 2017!

PS: It’s not too late if you’d like to make a donation in support of Lung Cancer research … you have until midnight January 1st to help us win a trip to the Superbowl! ūüôā

Click here to donate: Hamer-Wilson Hope Team

There are many good causes, and many good opportunities to donate! Thank you for considering this one!

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# Hope Unites

A¬†whirlwind trip¬†and¬†a great opportunity to meet patients, caregivers, advocates, donors, doctors, and many others at Lung Cancer Canada’s Toronto events last month! I’m so grateful that I was able to participate in their fundraiser and¬†first ever Canadian¬†Lung Cancer Patient Summit.¬†I’m very impressed with the good work that Lung Cancer Canada is¬†doing!

The “Evening of Hope”, the Thursday evening fundraiser, was a fun night where I met a variety of interesting people. Woven through the laughter and tears¬†was¬†much hope and joy, and deep appreciation for the people and work of Lung Cancer Canada. I felt very blessed!

If you look below, you’ll get an idea of what kind of¬†day the Patient Summit was on Friday. It was, in its own very small kind of way, a marathon of hope! So many¬†excellent presentations about¬†innovative and¬†exciting advances in the treatment of lung cancer! A lot of good info about how to access and pay for new treatments too!

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During lunch, we were honoured to hear¬†from Darrell Fox, Terry Fox’s younger brother. The Terry Fox Foundation has raised over $700 million for cancer research worldwide! We are so grateful for Terry Fox, his family and legacy! What a treat to hear Darrell¬†speak – humbly and powerfully – and then talk more with him later¬†in the afternoon. I am grateful for his encouragement!

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There was a beautiful atmosphere of encouragement and sharing at the event, and I appreciated the opportunities to listen to and learn from a variety of people. Many patients have to travel for treatment, and that can be very costly. I heard one oncologist offer a spare room to a patient. Such kindness!

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I got to meet Chris Draft, a former NFL linebacker who founded the Chris Draft Family Foundation and serves as a huge advocate on our behalf. You can watch a video he made by clicking: Team Draft РWhat is the Biggest Cancer Killer? (Spoiler alert: the answer is Lung Cancer) What an encouraging and inspiring person!

 

Probably my highlight of the two days was to meet this group of special women, listen to their stories, and receive their support and encouragement.

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These lung cancer patients / caregivers travelled from the West Coast, the East Coast, and places in between to gather at the Patient Summit. What a gift to connect! Lung cancer isolates. # Hope Unites!

And there is reason for hope!

But there are also a lot of grim statistics. Lung Cancer Canada recently released their 2016 Report, which you can read here:¬†Faces of Lung Cancer Report 2016, if you’re feeling brave.img_7968

There’s a picture of me & my kids in the report.

Last month was Lung Cancer Awareness Month, and I learned a bit about advocacy and Twitter through trying to tweet some Lung Cancer facts. I’m @JillHW on Twitter, and you are welcome to follow, though I can’t promise how much I’ll be there in the coming months!

Lung Cancer causes 27% of cancer deaths, yet receives only 1% of personal donations.  

I’ve entered Team Draft’s Superbowl Challenge fundraiser, and I would be honoured if you’d consider¬†supporting us by clicking on¬†Hamer-Wilson Hope Team.

I came home from Toronto exhausted and energized! I came home inspired to serve as an advocate for Lung Cancer Patients and our families. I hope I will get many opportunities for many, many years!

Hope is powerful!

 

 

 

 

 

 

 

 

 

November Awareness

November is Lung Cancer Awareness Month. If you follow me on Facebook, you may have noticed I changed my profile and cover photos for November. Have you noticed any other indications of¬†Lung Cancer Awareness Month? I haven’t seen many.

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Did you know that Lung Cancer is by far the most common type of cancer, and by far the leading killer (of all cancers) in Canada?

Did you know that Lung Cancer kills more than 20,000 Canadians each year? Did you know Lung Cancer kills more people than Breast, Prostate and Colon Cancer combined?

I learned these sad facts through my involvement with Lung Cancer Canada.¬† lungcancercanada.ca¬†They’ve got a few events that I’m planning to be at this month, including the Lung Cancer Patient Summit in Toronto and the Lung Cancer Canada Evening of Hope in Ottawa.¬†I’ll be speaking at the Ottawa event. Busy month for me!

November can be a rough month, especially if one spends time reflecting on numbers like these.

Lung Cancer research is shockingly¬†under-funded, especially when compared with funding for other cancers which don’t take nearly as many people away from their family and friends. Lung Cancer accounts for 25% of all cancer deaths in Canada. Ugh.

I’m thankful that these numbers aren’t the whole¬†story!¬†I’m thankful for researchers and doctors¬†and¬†nurses and administrators and fundraisers and so many generous people who are working hard to change¬†these horrible stats!

I’m thankful that this clinical trial I’m on is making a huge difference for me and my family and friends. I hope this drug¬†will help¬†many more who follow.

I’m thankful for hope, and those to seek to inspire it for lung cancer patients.

Some members of my lung cancer community talk about “Outliving Lung Cancer”, ¬†“Shining a Light on Lung Cancer”, and “Hope Beyond Cure”.* ¬†I am thankful for them and for the hope that they help inspire in me and many others. Hope is good!

*  outlivinglungcancer.com   hopebeyondcure.com

I don’t know much about serving as¬†a patient advocate, and I¬†don’t know¬†if¬†this is my calling, but I’m hoping I’ll learn more, meet some great people, and be encouraged at these Lung Cancer Canada events this month. I’ll let you know how it goes!

This month I’ve been enjoying¬†lots of walks, aiming to gradually increase my fitness. Let me show you¬†some of the beauty I’ve been privileged to see¬†… even in November! ūüôā ¬†Thank you for journeying with me: it’s good to have companions!

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