Month: November 2025

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

/ edebock / 4 Comments

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!

 

Thinking about boots

/ edebock / 2 Comments

Winter’s arrival is later than usual this year. We haven’t seen a snowflake yet which is highly unusual, but the weather forecast tells us they’re coming soon. I’m definitely not a fan of the season as it’s always way too long and too cold here on the Canadian prairie, but one thing that I do look forward to every year is wearing boots. 

This week, I decided that I’d put off bringing my winter boots out of storage for as long as I could. It was time to get them ready for the season. That involved cleaning and polishing the ones that needed it, then waterproofing all of them with a protective spray. 

Getting ready for winter also involved saying a sad goodbye to two pairs of boots. The tall brown ones that I bought second hand back in 2019 were too worn out to continue wearing and a cute pair of ankle boots, also brown and also thrifted, were donated again. As much as I loved them, they hurt my feet, so I decided to take my own advice from last week’s post and not sacrifice comfort for style.

That leaves me without any brown boots. I have one pair of tall black boots and four pairs of ankle boots in various colours and styles, so I don’t really need more, but since I love brown and it’s very much on trend this year, I might keep my eye out for a pair or two. After all, can you really have too many pairs of boots? 

Image: ChatGPT

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.