Health

Overcoming writer’s block and wishing you a Merry Christmas!

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The blog has been silent for more than two weeks and I can’t even blame it on the busyness of the season because we’ve kept our Christmas preparations very simple this year. No, it definitely hasn’t been that.

AI describes writer’s block as “a temporary inability to produce new work or a creative slowdown, characterized by feeling stuck, lacking ideas, or finding writing difficult, often stemming from anxiety, stress, perfectionism, or burnout, not a lack of skill.”

Feeling stuck… lacking ideas… stemming from anxiety and stress? Yes, I think that probably describes exactly what’s been happening! If you’re a regular reader of the blog, you already know that I had an ablation in mid November to destroy a cancerous tumour on my liver. After a few days of brain fog, loss of appetite, and absolute exhaustion, I started to feel better and although my energy level wasn’t quite what I was used to, I was soon back to all my normal activities.

Then, two weeks ago, I noticed signs that something wasn’t quite right. Blood tests showed that my liver enzymes were seriously elevated. I wasn’t in pain and I had no obvious signs of infection, so the cause was a mystery. That led to more blood tests, two unplanned trips to the city, a CT scan, a FibroScan (similar to an ultrasound), and two consultations with a very nice hepatologist (liver specialist). In a health care setting where it often takes months for a person to get a scan or see a specialist, I was amazed at how fast all of this happened and of course, my mind went to all kinds of worse case scenarios. Thankfully, to make a long story short, there is no sign of anything wrong with my liver and the specialist is convinced that what we’re seeing is simply effects of the tumour that was burned dying off. As a precaution, I’ll be having weekly blood tests until things return to normal.

Anytime the blog is silent for this length of time, I start to feel like I’m letting my regular readers down and I also know that some of you start to worry. Now that I’ve made myself sit down and write this, hopefully the creative juices will begin to flow again and I’ll get back into my regular routine of posting every Friday. Probably not this week though as we’ll be spending time with family and hope you will be too.

Living as far north as we do, I’m always delighted when the winter solstice arrives and we can begin looking forward to the days getting longer again. I admit to being a little jealous when our oldest son, who lives in North Vancouver, sent me photos of roses in bloom earlier this week! We had a blizzard on Wednesday, so we’re living in a very white world right now. This is what Christmas looks like to me though!

Wherever you’re celebrating this season and whether you have a white Christmas or not, I hope you’re warmed by the love of family and friends and I wish you a very Merry Christmas!

Keeping Christmas simple

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If you came to the blog last Friday looking for a new post and didn’t find one, I apologize. If you could have looked through your screen all the way to our house, you would have seen me curled up on the couch under a soft, cozy blanket that our granddaughter gave me for Christmas a few years ago. Listening carefully, you might have heard hubby in the kitchen trying to rustle up a meal for us even though cooking is not his forté. On Monday of that week, I’d had an ablation to destroy a neuroendocrine tumour on my liver and it took far more out of me than I expected.

In her follow-up report, the specialist described the procedure as a “technically challenging CT guided ablation” and challenging it was! Instead of the 3 hours that I was originally told I’d be at the hospital, I was there for over 15! As often happens with these tightly scheduled appointments, there was a delay in getting started, but it was the location of my tumour that made the procedure such a challenge. It took a very long time for her to place the probe in exactly the right location to fry the tumour. So long, in fact, that I was beginning to think that it wasn’t going to happen.

Yes, you heard that right! Although some sedation was provided to help me relax, I was awake and aware of what was going on throughout the entire procedure. Definitely not fun, but necessary so that I could inhale, exhale, and hold my breath at the right moments to help with the precise placement of the probe.

After it was finally over, we ended up having to stay at the hospital much longer than anticipated because my oxygen level dropped, possibly a reaction to pain medication. Two extremely caring nurses stayed well beyond the end of their shift to monitor and care for me, but late in the evening I was transferred to emergency. It was after midnight by the time my oxygen level was finally back to normal and we were allowed to leave. Thankfully, we were only driving across the city to our son’s place and coming home the following day!

The first few days at home are a bit of a blur. I wasn’t in much pain, but there was brain fog, loss of appetite, and absolute exhaustion. Although hubby did his best in the kitchen and I tried to force myself to eat, I lost seven pounds in less than a week. Once things began to turn around, I started to worry about how we’d possibly be ready to celebrate Christmas in just a month’s time and to beat myself up for not being better prepared in advance.

That’s what today’s post was actually meant to be about… keeping Christmas simple! Somehow, over the years, celebrating the season came to mean trying to do too much too perfectly, but lying on the couch, I had a lot of time to think about what Christmas means to me and which of our traditions matter most. At one point, I turned to hubby and asked if he’d mind very much if we didn’t bother putting up the tree this year. He said he was fine with that, so unless I get a sudden burst of energy and change my mind, it’s going remain in storage. I do plan to do some simple decorating this weekend, beginning with our nativity sets as they represent what this season is really all about. I’ll miss the lights on the tree, but some soft candlelight and a string of tiny twinkling lights will do. 

Christmas wouldn’t be Christmas without my mother’s shortbread and the nuts and bolts that have been a family favourite since I was a child so I’ll be making those, but if I decide that we need more baking than that, I’ll be buying it this year. 

We already simplified Christmas shopping last year by transitioning from purchasing individual gifts for each of our grown children, their spouses, and all eight grandchildren to giving family gifts instead. That’s a new tradition that we plan to continue and I’ve already informed the kids that this year’s gifts might be monetary. Without the pressure of trying to find the perfect gift for each person on our list, we’re enjoying shopping for small stocking stuffers for the son and family who will be hosting us for Christmas this year.    

As I contemplated what I love most about Christmas, I realized that connecting with people is top of the list. In addition to spending a few days with our son’s family over Christmas, we’re planning a mid December visit with our daughter and hers. While my energy level hasn’t returned to normal yet and I’m going to have to be careful not to overdo, I’m also looking forward to a few select events with friends. The first, this evening, will be a ladies Christmas banquet and fashion show in a nearby community. 

While I was lying on the couch last week, my Christmas cactus bloomed. It often produces profusely at this time of year, but this time there was just one blossom! It too, seemed to be saying, “let’s keep things simple this year!” In keeping with that thought, I’m going to be intentional about carving out more time on the couch with my cozy blanket, a hot drink (or maybe a glass of wine), a candle burning, and a Hallmark movie on TV or a book in my lap.   

Image: ChatGPT

 

The great zebra debate

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There’s a great debate in neuroendocrine cancer circles over the use of the zebra as our symbol. At one extreme are patients, usually women, who show up at meetings and conferences decked out from head to toe in zebra stripes and who refer to one another as fellow zebras. On the other side of the debate, the world’s best known and most highly revered patient advocate is so opposed to the idea that he doesn’t allow anything zebra on his social media sites. He thinks that it’s an infantile gimmick that trivializes the grave nature of our disease and that it’s actually detrimental as an awareness tool.

So, how did the zebra become our symbol in the first place? In North America, medical students are taught “when hearing hoofbeats, think of horses, not zebras.” Neuroendocrine tumours (NETS) are very difficult to diagnose. The symptoms are usually vague and similar to more common health problems. Many family doctors have never encountered a NETS patient so when they’re presented with symptoms like stomach pain and diarrhea, they naturally think of things like Irritable Bowel Syndrome, Crohn’s Disease or lactose intolerance. They think of “horses”, not “zebras”.

When it comes to the great zebra debate, I stand somewhere in the middle. I think we need to take advantage of every available opportunity to draw attention to our cause and if that includes zebra stripes, I’m fine with that. After all, branding works. For example, the pink ribbon and the colour itself have become highly recognized symbols of breast cancer. While you’ll never see me wearing zebra stripes from head to toe, partly because I think it looks silly and partly because I don’t look good in black and white, I do have a zebra striped top in cream and brown and on occasion, wearing it has led to a conversation about my cancer.

Although within weeks of learning that I had neuroendocrine cancer, I wrote a blog post entitled I’m a zebra!, I’ve now joined the ranks of those who cringe at being called that. Referring to ourselves as zebras makes it sound like we’re part of an exclusive club or a cult! Zebra refers to a diagnosis, not a person. While I have NET cancer, I am not my disease.

In my advocacy role and as a support group leader, I work with patients on both sides of the great zebra debate. I would really like to know your opinion. Do you think that symbols like the zebra and the striped ribbon can be effective in spreading awareness of a disease? Or do you think that they’re silly and make light of an important topic? Please leave a comment and let me know.

And, in closing, although it has very little to do with today’s topic, I can’t resist sharing the cover of the January 15, 1926 issue of Vogue magazine!

NET Cancer Day 2025

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Once again, today is NET Cancer Day. November 10th is a day set aside to increase awareness of neuroendocrine cancer and to promote improved diagnostics, treatments, care, and research, but for those of us who live with the disease, every day is NET Cancer Day.

Here are a few alarming facts that point out why a day like today is vital:

  • Over 90% of all NET patients are incorrectly diagnosed and initially treated for the wrong disease!
  • The average time from onset of symptoms to correct diagnosis often exceeds 5 years!
  • Over 50% of NET patients are already at stage 3 or 4 when diagnosed!
  • Many primary care physicians are unfamiliar with NETS and some still falsely believe that it isn’t even cancer!

These are just some of the reasons that I have become involved in patient advocacy over the past couple of years. Once considered a rare disease, NETS has become the fastest growing class of cancer worldwide. Although the reasons for this aren’t fully understood, it’s likely due to increasing awareness and better diagnostics.

In addition to my role as a member of the CNETS (Canadian Neuroendocrine Tumour Society) Advocacy Advisory Board, I’ve become actively involved in trying to improve the patient experience in a number of other ways. I had the opportunity to participate as a patient representative in an Ipsen project to design an injection toolkit to make the experience easier for patients who are newly prescribed the medication that I receive every 28 days. Ipsen is the pharmaceutical company that produces the drug.

Also, if you’ve been reading my blog you know that I participated in this summer’s CNETS “Hoofing It” fundraiser. With the generous support of many, including some of you who read the blog, we managed to raise over $40,000 for NET cancer research here in Canada. An additional bonus for me was the fact that the “hoofing it” that I committed to as part of this initiative got me out walking almost every day. Now that the campaign is over and the weather has turned cold, daily walking has become a habit and I’ve dusted off the treadmill in the basement so that I can keep it up over the winter!

Another big opportunity came my way earlier this year when I was asked to co-lead the CNETS Alberta patient support group that meets online once a month. This really was a big step for me as I’d never been part of a support group before! Every month I hear stories from patients who were initially misdiagnosed, who feel confused or unheard, whose symptoms have been minimized or dismissed as all in their head, who feel lost trying to navigate the health care system, or who don’t know how to advocate for themselves. More than ever, I’ve come to realize how badly we need to continue raising awareness and promoting better diagnostics, treatments, care, and research. One day a year just isn’t enough!

And now, on a more personal note, you may remember that in my 12 year cancerversary post at the end of August, I mentioned the latest tumour on my liver. A week from today, on November 17th, I’ll be having a CT guided ablation to destroy it. A needle-like probe will be inserted through my abdomen and into the tumour where it will deliver microwave energy to kill the cancer. This is done as a day procedure, but I’ll be required to stay in the city overnight in case of complications. I’m not sure what the recovery will entail, but hopefully I’ll be back on the treadmill before long!

 

Book of the month – October 2025

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When the Body Says No: The Cost of Hidden Stress

Gabor Maté, MD

In this international bestseller, renowned mental health expert and speaker, Dr. Gabor Maté, provides insight into the critical role that stress and emotions play in the development of many common diseases.

Although written for a general audience, When the Body Says No definitely wouldn’t be everybody’s cup of tea. It’s like reading a textbook, but my daughter and I both read it recently and when I discovered that another friend was also reading it, I decided that it might appeal to more of you and that it would be worth reviewing here.

Dr. Maté has experience as a family practitioner and a palliative care physician and has also worked with the addicted men and women of Vancouver’s Downtown Eastside. He weaves together scientific research, numerous case histories, and his own insights and experience to explain the relationship between psychological stress and the onset of chronic illnesses including arthritis, cancer, diabetes, multiple sclerosis, Alzheimer’s disease, and heart disease. While I don’t agree with everything he says and he definitely needs to update the section on prostate cancer (the book was published in 2003 ), a lot of it makes very good sense. 

What I liked best was the fact that Dr. Maté validated what I have believed for years; that the stress I endured prior to and especially during the early decades of our marriage and the anger that I suppressed during those years contributed to my present health conditions. In fact, the author would probably say that they caused my cancers. As he says, all of us probably have within our bodies the occasional rogue cell that could multiply and become cancer. In most cases, the body has the resources to destroy those cells before they spread, but chronic stress and repressed anger reduce the body’s ability to do that and magnify the risk of developing the disease.  

In the final chapter of the book, Dr. Maté addresses what he calls the seven A’s of healing: acceptance, awareness, anger, autonomy, attachment, assertion, and affirmation. He believes that pursuing these will help us grow into emotional competence and empower us to be our own health advocates.

Note:  This book was published in the US under the title When the Body Says No: Exploring the Stress-Disease Connection.

 

9 signs that I might be 70 going on 40

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Earlier this week, I played a round of golf with a group of younger women who were astounded to learn that I’m over 70. That got me thinking about a recent post by one of my favourite bloggers, Pamela Lutrell of Over 50 Feeling 40. Pam, who is the same age as I am, shared a very interesting article, 9 signs you’re 70 going on 40 — without even trying by Avery White, and then wrote a self evaluation based on the author’s 9 points. Today, I thought I’d do likewise.

I want to preface my personal evaluation by saying that I’m not interested in trying to look younger than I am. I love the introduction to White’s article… “There’s something magnetic about people who’ve crossed into their 70s but still radiate the spark, wit, and energy of someone thirty years younger. They’re not desperately clinging to youth or chasing trends — they’re just… alive. Fully, authentically alive. And they don’t even seem to be trying.” That’s definitely something I aspire to.

So let’s see how I’m doing.

1. You keep learning just for the thrill of it.

I think I’m doing very well in this category. I consider myself a lifelong learner with a love of reading and a passion for research. 50 years ago, I was that odd student in university who loved researching and writing papers and I haven’t really changed.

We live in an ever changing world, but even in my 70s, I try to keep up with new technology. Like Esther of the Old Testament, I believe that I was born “for such a time as this” and that it behooves me to learn to use the tools of today (although I do have to call on my more tech savvy offspring for help from time to time!)

2. You move because it feels good—not to punish yourself.

Again, I’d give myself an excellent mark in this area. I exercise for about 20 minutes before I leave the bedroom Monday to Friday mornings and I’m striving to walk at least 5 days a week, which reminds me that I’m very thankful to each one of you who has contributed to my Hoofing It fundraiser for neuroendocrine cancer research! I also enjoy bowling during the winter and hiking, kayaking, and playing golf in the summer.

I exercise, not because I’m trying to look younger or to achieve a perfect body, but simply because it feels good and because I believe in the old adage “use it or lose it”.

3. You don’t obsess over your age.

I really don’t. In fact, I’m proud of my age. When I was diagnosed with cancer 12 years ago, I had no expectation that I’d reach my 70s, so I’m just very thankful to be here. My age doesn’t define me and for the most part, it doesn’t limit me although I do get a bit frustrated when I can’t hit a golf ball as far as I used to!

4. You say yes more than no.

I’m not sure that I actually agree with this one. As I wrote in this post earlier this month, it’s okay to say no and to be able to do so without feeling guilty. I like to be spontaneous and I do say yes to lots of things, but I also know my limits and try not to overdo.

5. You have friends of all ages.

This has always been true of me, but these days most of my friends are younger than me, some as young as my own children. Sadly, some of my more elderly friends have passed away in recent years.

6. You laugh easily—especially at yourself.

I don’t know about laughter being the best medicine, but apparently it really is good for our health. According to the Mayo Clinic, one of my first go-tos for all things medical, “When it comes to relieving stress, more giggles and guffaws are just what the doctor ordered.” Knowing that, I admit that I probably don’t laugh as much as I should, but I’m definitely able to laugh at myself. Worrying less about what other people think is one of the benefits of aging for most of us and I certainly don’t embarrass as easily as I did when I was younger.

7. You still chase new goals—even small ones.

I think this fits well with #1, being a lifelong learner. I am always ready to try something new and while I don’t have a written bucket list, there are certainly a few things in the back of my mind that I haven’t done yet.

8. You don’t over-nostalgize.

I definitely do not live in the past. Parts of it are much too painful and dwelling there would rob me of joy. Instead, while trying to learn from the mistakes of the past, I try to live in the present and look forward to the future.

9. You make people feel seen.

As an introvert, this final point is one where I might give myself a failing mark, but it’s something that I’ve been consciously working on. Wherever I happen to be, I try to notice the people around me. Sometimes I simply smile as I pass by, but I’ve started to look for opportunities to offer a genuine compliment or an encouraging word. This is especially true when I’m in the cancer clinic where I know that people are often feeling stressed or overwhelmed and really need to feel seen.

Whether you’re in your 70s or not, do you recognize yourself in any of these points? One of Avery White’s final thoughts wraps up the topic perfectly. “The truest kind of agelessness comes from your mindset, your curiosity, your willingness to stay engaged — with people, with ideas, with life itself.”

18 years of retirement!

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With the school year coming to an end this week, hubby and I have been retired for 18 years. 18 years! How is that even possible? That’s the same length of time that I taught at Lougheed School, a small prairie school that closed a couple of years later due to declining enrolment. Perhaps it says something about our chosen career that 18 years of teaching seemed like a very long time while the past 18 have flown by!

When I reflect on all that we’ve experienced in the past 18 years, I realize how full and how rewarding they have been. Retirement has included fulfilling long held dreams like teaching English in Japan and later, China. One might argue that that wasn’t really retirement. After all, we were employed and we earned a paycheque, but it wasn’t really about the work or the money. Those were simply what allowed us to be there. It was all about adventure; about living shoulder to shoulder with the people of another land and learning about their culture. It was about traveling to other locations in Asia during our holiday breaks. We also spent one summer on the Pacific island of Saipan serving as short term missionaries.

Living with cancer for the past 12 years has curtailed our ability to spend extended periods of time outside the country and the pandemic kept us home for a couple of years, but tourist travel has also been a big part of our retirement years. We’ve visited Mexico six times, ziplined over the rainforest in Costa Rica, toured Israel, and visited several European countries as well as nine Canadian provinces, one territory, and numerous US states.

Speaking of retirement, my father always said that there were no end of things that one could do as long as they didn’t need to be paid to do them and we have certainly found that to be true. Volunteering in various capacities in our church, our community, online, and most recently in a far and distant land, has helped give meaning to our retirement years.

Retirement has brought some unexpected surprises. Learning to operate a tractor and a combine definitely wasn’t part of this city bred girl’s retirement plan, but several years of helping a friend at seeding time and harvest gave me more joy than I could ever have imagined.

Since we retired, our family has grown to include eight grandchildren who have made our lives so much richer. In fact, that’s why this post is a day later than I’d originally planned. We visited three of them earlier this week and now another three are visiting us. As much as I love to write, going on adventures and playing games with the grandkids and late night cuddles and chats with one who has trouble sleeping are far more important than anything I could ever post on here.

To say that our retirement years have been rich would be an understatement. I’m incredibly thankful that, in spite of our health challenges, we have been able to experience so much. As time flies by I sense an urgency to continue seeing and doing as much as we can while we’re still able, but I don’t see us slowing down anytime soon, so here’s to a few more years of purposeful and productive retirement!

All packed and ready to go!

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We’re packed and ready to set off on our next big adventure, but I don’t remember ever having so much trouble deciding what to put in a suitcase! I pondered for a long time and even tried on several different combinations before finally settling on what I would take. Looking back at my packing review from our 2019 trip to Europe helped. Interestingly, a few of the same pieces are going with me again this time! I also thought about what would be culturally appropriate and, of course, I considered the weather. 

Due to the sensitive nature of the area and the ministry that we’ll be involved in, I’ll only be able to share the tourist parts of our trip on the blog, but according to weather forecasts for the various locations that we’ll be travelling to, it looks like daytime temperatures will mostly be in the mid to high 20s C (75 to 85ºF). I suspect that some, but not all, of the facilities that we’ll spend time in will be air conditioned, so we need to be prepared for that as well.  

Although we’re leaving home today, we don’t actually fly out until Monday. Over the weekend, hubby and I will be attending a national neuroendocrine cancer patient conference in Calgary where I’ll be sharing my patient story tomorrow afternoon. That complicated the packing process somewhat because we’ll be wearing things at the conference that we won’t be taking overseas with us. When the conference is over, we’ll spend Sunday night at our daughter’s and then leave our vehicle with her. That meant that I could also pack a separate tote bag to leave there while we’re gone. I just have to make sure that everything is in the right place when we leave for the airport!  

I expect to have internet access most of the time that we’re away and hope to squeeze in time to update the blog from time to time, so come along and travel with us! 

Celebrating wellness

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In 2021, Alberta Blue Cross launched the Faces of Wellness program to celebrate Albertans who are champions of wellness in their communities whether by making positive lifestyle changes, promoting a health-related cause, making the most of life while living with a chronic condition, standing up for mental health, or being a role model for others. I was completely unaware of the program until early last fall when I saw a post about how to apply or nominate someone else for the 2024 award. The deadline to enter hadn’t passed yet, so I thought “why not?” It would be another opportunity to educate someone about neuroendocrine cancer even if it was only the contest judges.

The application process involved writing a detailed story outlining the individual’s wellness experience, how they embraced the courage to overcome, and examples of how they live a life of wellness and regularly encourage others to do the same. I wasn’t sure how I could accomplish all that in the limited space that was allowed, but after writing a longer version and then seriously editing it, this is what I came up with.

Eleven years ago, I was diagnosed with stage 4 neuroendocrine cancer (NET), a disease that even my family doctor had never heard of. For several years, I had been experiencing symptoms similar to those of several more common conditions and my slow-growing cancer was initially misdiagnosed as gastritis.

My cancer isn’t curable, but ongoing treatment keeps it from growing and spreading. Since my NET diagnosis, routine scans detected 2 unrelated cancers which were removed surgically. More recently, I was also diagnosed with type 2 diabetes.

In spite of all this, I am thriving! I’m not dying of cancer, I’m living with it. Wellness is about more than physical health. Spiritual, emotional, and social well-being are equally important. I have a strong faith and supportive family and friends who make the journey easier. A positive attitude won’t cure my cancer, but it certainly makes living with it easier.

Maintaining wellness involves actively practicing healthy habits. Eating well and being physically active are vital. I’m almost 72, but I exercise 5 days a week and love nothing more than paddling my kayak, going for a hike, or playing a round of golf.

From the beginning of my NET journey, it has been my mission to educate people in my community and elsewhere about the disease. I’m actively involved in patient advocacy as a member of the Advocacy Advisory Board to the Canadian Neuroendocrine Tumour Society. I’m involved in initiatives to try to make the patient experience better for all of us including those who have not yet been diagnosed. It’s not uncommon for people to experience symptoms for 5 to 7 years before receiving a correct diagnosis. That needs to change! Neuroendocrine cancer is the fastest growing class of cancer worldwide, but it’s not well-known in the medical world. That, too, needs to change! I’m passionate about making a difference by being a voice for change.

I sent off my submission and hardly gave it another thought until sometime in December when I received an email informing me that I had been chosen as a runner-up and would be receiving a $25 Atmosphere gift card in the mail once the Canadian postal strike came to an end. Apparently this is a face of wellness!

And so now, for those of you who have been following my wellness journey, an update. February was a month of tests, scans, and appointments. I was supposed to meet with my specialist on Wednesday to discuss the results of many of those tests including a CT scan that was done the week before. That appointment had to be postponed, however, because the scan results weren’t available yet and let me tell you, scanxiety (scan + anxiety) is real! I had already seen the results of the other tests online and most of them were good, but there was one that concerned me and made me wonder if the cancer was beginning to grow or spread again. Thankfully, the scan results finally showed up online at 10 o’clock last night! While I don’t understand all of the medical jargon and will have to wait for the specialist to interpret some of it, the final statement was clear, “No evidence of progressive disease from November.” In other words, nothing has changed since my last scan three months ago!

Over the past month, I’ve also learned that my A1C (3 month blood sugar level) continues to be stable (with medication), my blood pressure is excellent (also with medication), and my bone density has not deteriorated over the past two years. This is all very good news and, in spite of having cancer, I’m feeling pretty blessed to be a face of wellness!

World Cancer Day 2025: United by Unique

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February 4 is World Cancer Day. There are more than 200 different kinds of cancer and every patient’s experience is different. That’s why the new World Cancer Day theme, United by Unique, resonates so strongly with me. While each of our stories is unique, we are united in our message and in our desire to raise awareness and see progress made in fighting this dreadful disease. 

The emphasis of the 3-year United by Unique campaign that kicks off today will be people-centred care. Behind every diagnosis lies a unique human story. These are stories of grief, pain, healing, resilience, love and so much more. A people-centred approach to care that listens to patients’ stories and fully responds to each individual’s unique needs with compassion and empathy will lead to the best possible outcomes.  

People living with cancer don’t always feel heard, seen, or understood. They are often bewildered, feeling isolated and voiceless at a time when they’re also learning to navigate an unfamiliar and confusing health care system and dealing with the emotional highs and lows of cancer diagnosis, treatment, or recovery. That’s why the first year of this campaign will focus on telling our unique stories.

I feel very fortunate to receive my cancer care at the Cross Cancer Institute in Edmonton, Alberta, Canada, a facility where it is common practice to look beyond the patient to the person as a whole and to consider the impact of their cancer on all aspects of their life. When I go for appointments, I’m routinely handed a clipboard with a questionnaire that delves into not only the physical symptoms that I might be experiencing, but also the psychosocial ones. The CCI offers a wide range of supportive services that go far beyond the patient’s physical well-being. The health care team there includes professionals in psychology, social work, spiritual care, nursing, and psychiatry and available services include individual, couple, and family counselling; professionally-led support groups; and practical supports for financial and other basic needs. While the need for these supports has not been part of my unique story thus far, I’m glad to know that they’re available should I ever need them and I wish that that was true for patients everywhere.  

I have been invited to share my unique patient story at a Canadian Neuroendocrine Tumour Society (CNETS) conference in May. The big challenge is going to be condensing the approximately 20 years from initial symptoms to present day into a 10 minute talk that educates, encourages, and inspires those in attendance, especially those who are in the early days of their journey and who need to know that it’s possible to live long and live well in spite of their diagnosis. 

United in our goals, unique in our needs.