Cancer

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.

 

My 12 year cancerversary!

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Yesterday was my 12th cancerversary. Twelve years have passed since I heard those dreadful words, “It’s cancer and it has already spread.” At the time, that sounded like a death sentence, but two weeks later we learned that I have neuroendocrine cancer (NETS) which, while not curable, can be treated and usually grows more slowly than most other cancers.

One of the things that I learned early on was how important it is for patients to advocate for themselves. Last Friday proved that point. When I saw my oncologist in mid July to discuss the results of my latest CT scan which showed that a small tumour on my liver had started to grow, he referred me back to the interventional radiology specialist who did my radioembolization in March of last year. He expected that I would hear something within a couple of weeks, but when we returned from our recent trip, more than a month had passed and I’d heard nothing. On Friday morning, I called and left a message asking for confirmation that the referral had been received and, if possible, an update on what was happening. In less than half an hour, I had an appointment to see the doctor during her noon hour on Monday! I can’t help wondering how long I would have had to wait if I hadn’t called.

We actually had to wait quite awhile to see the doctor on Monday because she was tied up in a procedure that took much longer than expected. When we finally got in, she did an ultrasound and wasn’t able to find the tumour. Unfortunately, that doesn’t mean that it isn’t there. It simply means that it’s in a location that isn’t easy to see. After discussing the fact that the tumour is quite small and that I don’t have any symptoms, we decided on a tentative treatment plan, but we aren’t actually going to do anything until after my next CT scan on September 26. This battle is really a balancing act. We don’t want to treat too soon because that can limit what we might be able to do in the future, but we also don’t want to wait too long and let the tumour get too large.

After twelve years of living with this, I’ve become much more comfortable with waiting. Rather than worrying about what might or might not be happening inside me or about what the future might hold, I’m simply going to go on living my best life right now!

Image: Surya Ali Zaidan

If you would like to help, I’m still fundraising for neuroendocrine cancer research. Click here to visit my fundraising page. Although I’m nearing my $1200 goal ($100 for each of the 12 years that I’ve been fighting this disease) the campaign is still far short of what we need to fund research grants for the coming year. We could really use your help!

No one fights cancer alone

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My cancer is on the move again and so am I. It’s been 5 years since I last participated in the annual CNETS (Canadian Neuroendocrine Tumour Society) Hoofing It fundraiser and I’m late to the party this year, but I’ve decided to get involved again.

It’s been 12 years since I was diagnosed with stage 4 neuroendocrine cancer (NETs). Once the shock of learning that I had a cancer that I’d never heard of and that I’d be living with it for the rest of my life wore off, it became important to me to do what I could to help raise awareness of this little known disease and to support fundraising efforts for research, better treatments, and patient support. If it wasn’t for the research that organizations like CNETS fund, I probably wouldn’t be here today, so this is definitely something that’s very close to my heart!

I don’t think I’ve mentioned it on the blog before, but several months ago I became co-lead of the CNETS Alberta Patient Support Group that meets online once a month. Every month I hear from patients and caregivers whose lives have been turned upside down by this disease. Some are newly diagnosed and looking for answers. Others have been battling this for longer than I have and some are ready to give up hope.

After 16 months of stability following the radioembolization treatment that I had in March of last year, my cancer is growing again. Another tumour on my liver has started to increase in size and I’m waiting to find out how we’re going to treat it. At this point, my other tumours continue to remain stable and the cancer hasn’t spread to any new locations, but this is definitely beginning to feel a bit like a game of Whack-a-Mole! We haven’t exhausted all the possible treatment options yet, but this new development has reminded me how important it is that research into new treatments continues to move forward.

In past Hoofing It fundraisers, participants kept track of how many kilometres they walked, hiked, biked, or paddled, but not all patients are physically capable of doing those things. This year points are being assigned for a wider variety of physical activities. I’m not concerned about earning points though. My goal is simply to walk or hike at least 5 days a week until the end of September & to raise a minimum of $1200.

The walking part is easy. I was already doing that before we went to Europe, but since arriving home last month, I’ve been a bit lazy. Hopefully participating in this endeavour will provide the motivation I need to keep moving.

The $1200 is where you come in! As my new t-shirt says, no one fights cancer alone. I’m hoping that I can persuade you to visit my fundraising page here and make a donation. No amount is too small! Every cent received by CNETS during this campaign will go directly to neuroendocrine cancer research. We need to know what causes this disease, we need more and better treatments, and we need to find a cure!

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!

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.

How to look put together every day

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logo-by-samIt’s late in the day and I still haven’t written today’s Fashion Friday post, so this is going to be a quick one. We spent two days in the city this week attending medical appointments so that’s my excuse for not being better prepared. The good news is that the lab work and CT scans that I’ve had done over the past couple of weeks showed that my cancer is stable! That’s a word that I wasn’t sure I was ever going to hear again, so of course, I’m delighted. We’ll redo all the tests in three months time, but for now I can put that on the back burner and get on with other things.

We may not always feel as if we have it all together, but we can always look as though we do and how we look affects how we feel. Today I’m going to share 14 tips on how to look put together every single day regardless of age or occasion.

  1. Start by taking care of yourself. Regular exercise, a healthy diet, and adequate sleep go a long way toward looking and feeling your best.
  2. Get a good, low maintenance haircut.
  3. Good grooming is key. Develop a good skin care routine, make sure your hair is neat and clean, practice good dental hygiene, and don’t neglect nail care.
  4. Make sure your clothes are clean.
  5. Don’t wear wrinkled clothes (with the exception of linen which is supposed to be wrinkled). You might want to invest in a hand-held steamer for quick touch ups.
  6. Ensure that your clothing fits well.
  7. Invest in good basics. Shop within your means, but buy the best quality that you can afford.
  8. Use a fabric shaver to remove pilling from knitwear.
  9. Find the colour palette that works best for you.
  10. Make sure your footwear is clean and in good condition.
  11. Accessorize, but don’t overdo.
  12. Use makeup strategically. Again, don’t overdo.
  13. Practice good posture.
  14. And finally, wear a smile!

These tips might seem obvious, but you don’t have to look far to see women who ignore them, especially at this busy, sometimes frenzied time of year. Do you have any other tips to add to the list?