Health

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.

A post-holiday update

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Christmas has come and gone and the decorations are all put away. Christmas itself was a quiet one for hubby and I this year. It was just the two of us on Christmas morning, but we were joined by another couple later in the day for turkey dinner with all the trimmings. Then, two days later, the house was full with two of our grown children, their spouses, and six of our eight grandchildren here for the weekend! Every bed was taken as well as a couple of air mattresses and we managed to squeeze all twelve of us around the table at mealtime. Board games and trips to the tobogganing hill were enjoyed and it was a delight to see the cousins having so much fun together. But…

As grandchildren often do, one or two of them came with coughs and runny noses and Gram managed to catch one heck of a cold! Thankfully, the symptoms didn’t appear until after everyone left, but I was under the weather for several days. I’m finally on the mend, no longer depending on decongestants to breathe and although the cough still lingers, I don’t feel like I’m hacking up a lung. I’d normally say that I don’t feel my age, but this cold drained me of energy and definitely left me feeling old. Hopefully that’s just temporary! 

Speaking of age, we’re celebrating this guy today.

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It’s hubby’s 75th birthday today, definitely a milestone! It will be another quiet celebration though. At one point, I had thought about inviting friends in to celebrate with us, but between sickness and a house that’s gradually being stripped bare in preparation for upcoming renovations, that’s not happening.  

We’re in the process of emptying closets, clearing off shelves and countertops, and moving everything except our large pieces of furniture into the basement. Walls will be painted, ancient carpets replaced with wood flooring, baseboards and trim replaced, interior doors repainted, and the front door replaced. While the work is being done, we plan to be out of the way, but more about that later. 

I will be blogging from time to time over the next few weeks, but I’m not sure if there will be any fashion posts. I do have a couple of ideas rattling around in my brain, but right now my clothes are all over the place and I’m not sure what I’ll be able to pull together. Do stay tuned though!

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?

Book of the month – September 2024

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Hope for the Best, Plan for the Rest

Dr. Sammy Winemaker and Dr. Hsien Seow

Screenshot 2024-09-09 at 11.49.03 AMBeing diagnosed with a life-changing illness can be completely overwhelming. In Hope for the Best, Plan for the Rest, Drs. Sammy Winemaker and Hsien Seow offer a valuable guide to help patients and families deal with their new reality. Combining their decades of palliative care research and experience caring for seriously ill patients and harnessing the advice of thousands of patients, they offer 7 keys for navigating a life-changing diagnosis. With real-life stories, tips, and exercises, these compassionate experts empower patients with practical tools to help them successfully navigate the health care system with knowledge and confidence.

The 7 Keys:

  1. Walk Two Roads. Hope for the best, and plan for the rest. Toggle between being realistic and being hopeful.
  2. Zoom Out. Understand the big picture of your illness and what might lie ahead.
  3. Know Your Style. Review your past patterns for insights into how you will journey through your illness. Identify your coping strategies and your ways of processing information.
  4. Customize Your Order. Communicate your wishes, values, and beliefs to help tailor your care plan to your preferences.
  5. Anticipate Ripple Effects. Recognize that those caring for you will also need to be supported.
  6. Connect the Dots. Play a central role in coordinating your care (or identify someone who can).
  7. Invite Yourself. Speak up. Initiate conversations about what to expect and advocate for yourself.

These 7 keys are not steps or stages to be followed in a particular order, but are meant to be blended together and used as needed. After devoting one chapter to each of the keys, the writers wrap up with a chapter entitled Putting It All Together and then two final chapters that deal in more detail with the late and end stages of disease and the actual process of dying. They caution their readers to read those two chapters only if they feel comfortable doing so. The book would be a complete and helpful tool without them, but personally I found both chapters informative and reassuring.

This book, published in 2023, wasn’t available ten years earlier when I received my first cancer diagnosis. Looking back, I think that over time I implemented most of the keys either intuitively or through bits and pieces of advice that I received along the way, but how much better it would have been to have a book like this one to guide my way. It’s a book about hope (my one word for 2024) in the face of uncertainty. It’s about living well, being fully informed, and getting the best care available. It’s about being a whole person and not just a patient. It’s a call for patient-led, patient-centred health care.

Another cancerversary!

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Eleven years ago today I was told that I had stage 4 colon cancer. Thankfully, a biopsy proved that diagnosis inaccurate or I probably wouldn’t be here to tell you about it today. According to the Canadian Cancer Society, the 5-year survival rate for colon cancer that has spread from its original location to distant parts of the body is 11%.

What I do have is neuroendocrine cancer (NETS), a slow-growing cancer that originated in my colon, more specifically in the cecum which is part of the colon. By the time it was diagnosed, I had been experiencing vague symptoms for several years. In fact, I was told that I’d probably had it for 7 to 10 years. At diagnosis, it had already spread to lymph nodes and my liver. Accurate stats and information about survival rates aren’t as readily available for neuroendocrine cancer because it isn’t as well-known or well-documented as many of the more common varieties, but I don’t really need to know those numbers. I just need to know how I’m doing right now and I found that out last week.

In response to my oncologist’s, “How are you?” as he entered the examining room, I replied, “I’m good.” Glancing at the notes in his hand, he enthusiastically responded, “Yes, yes you are!”

I wasn’t as exuberant about the results of the previous week’s CT scan as he appeared to be. I had hoped to hear that March’s TheraSphere treatment had completely annihilated the largest tumour on my liver. In fact, it had only shrunk by about 20%. The doctor hastened to remind me that shrinkage is always a good thing. That, combined with the facts that I’m not experiencing any symptoms and that the scan also showed “no progression of disease” is actually very good news!

I’ll have another CT and more lab work done in November, but in the meantime I’ve got lots of living to do. In addition to the many ways that I’ve found to stay active and busy in retirement, I’ve also become more active in patient advocacy over the past year. As a member of the CNETS (Canadian Neuroendocrine Tumour Society) Advocacy Advisory Board, I’m working with other patients and caregivers from across the country to try to increase awareness of our disease, shorten the pathway to diagnosis, advocate for equal access to treatment for patients across the country, and promote research into newer and better treatments. I’m also involved in meetings with a group of patients and health professionals around the world as part of an initiative by Ipsen, the pharmaceutical company that produces the medication that I’m injected with every 28 days, to try to improve the patient experience.

That reminds me of another recent change. Hubby is now giving me that monthly injection which frees us up to take it with us when we travel instead of having to be at home to wait for the nurse’s visit. A cancer diagnosis is life changing for a partner or caregiver as well as for the patient, so this is really his cancerversary too. We aren’t doing anything special to celebrate, but we’re thankful for another year of relatively good health; another year of life!

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The notebook

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No, I’m not talking about Nicholas Sparks’ debut novel or the award winning movie adaptation. I’m talking about an actual notebook.

Some of the very best advice that I received in the early days following my first cancer diagnosis almost eleven years ago was given to me by a medical technician administering an unrelated bone density test. “Get yourself a notebook,” she told me. “One of those ones with several sections where you can keep track of different things. Take it to your appointments with you and write things down.” It sounded like good advice, so as soon as I left the clinic I headed over to Walmart and found exactly what I needed, a Five Star 5-subject notebook.

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There’s a section where I record tests, procedures, and treatments; another one for consultations; and one where I keep a record of the injections that I receive every 28 days… when, where, who administered it, and any reaction that I might have. There’s also a section where I record some of my test results. I have access to those online at MyAHS Connect, but there are a couple of tests that are done regularly that I like to keep a written record of so that I can easily note trends. Finally, there’s a section where I write down questions to ask at my next appointment. More than one of my doctors has commented that they wish more of their patients would do that.

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Not only is my notebook separated into sections, but each divider has a pocket front and back. Those have been great for storing business cards, handouts, consent forms, vaccination records, a family medical history, and my personal directive. One pocket also holds two very important lists; my current medication list and a list of my past surgeries, all fourteen of them. Unless you spend a lot of time seeing doctors, you probably have no idea how often I’ve needed those two lists; how many times I’ve been handed a clipboard and asked to fill out forms that require me to list all my medications and past surgeries. Without those lists, I’d be stumped. What year did I have my gall bladder out? What’s the name of that blood pressure med and what dose do I take? With my notebook in hand, all that information is at my fingertips.

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Thankfully, the notebook has a strong plastic cover and a stiff cardboard back. Without those, I doubt that it would have lasted all these years. After all, I’m sure it’s been to at least 150 appointments with me!

If you or anyone you know is ever diagnosed with a serious or chronic health condition, I’d definitely recommend getting a notebook. It really has made my journey easier.

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Cancer metaphors and an update

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Patients, caregivers, fundraisers, and even medical professionals use a variety of different metaphors to describe life with cancer.

From day one, I’ve referred to my cancer experience as a journey. As a seasoned traveller, when I was diagnosed I felt as if I was embarking on a trip into the unknown. It’s been a long and tumultuous trip, but the metaphor is one that still works for me. Some patients, however, are bothered by it believing that a journey should always be fun and something that you have control over.

An even more controversial metaphor is the one that refers to life with cancer as a battle. Although it’s very common, many people take exception to using the vocabulary of violence at a time when patients are at their most vulnerable. Within the language of winning and losing, there’s also the uncomfortable implication that those who’ve died of cancer are losers and that maybe if we just fight hard enough we can win. While I realize that there are limitations to any metaphor, I think that the battle metaphor can be empowering. I am in a fight for my life and cancer is the enemy.

Thankfully, no one fights cancer alone and that’s also where the battle metaphor works well. My closest ally is my husband who accompanies me to every appointment and is involved in every decision regarding my care. An army of skilled medical professionals with a vast array of formidable weaponry (chemical, biological, and nuclear) at their disposal direct my care and they are backed up by a battalion of prayer warriors around the world. Ultimately, the commander in chief, the only one who knows the final outcome, is the Lord Himself. As we sang in church yesterday,

So when I fight, I’ll fight on my kneesWith my hands lifted highOh God, the battle belongs to YouAnd every fear I lay at Your feetI’ll sing through the nightOh God, the battle belongs to You

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While my life with cancer is both a journey and a battle, at times it’s also a roller coaster and that brings me to the latest news that I want to share with you. After several years of stability, things began to change about 18 months ago. The first sign that my cancer was becoming active again were some changes in lab results. Two markers that are of particular significance for neuroendocrine cancer (NETS) patients had been gradually climbing and were now flagged as being higher than the normal range. Suddenly, the roller coaster went over the top and I felt like I was falling! More frequent surveillance eventually showed significant growth to the largest tumour on my liver. That led to the Therasphere treatment that I had in March of this year. The roller coaster dropped again when a post treatment CT scan showed what appeared to be a new growth in my lower abdomen raising concerns that my cancer was spreading. In mid April I met with a new oncologist. After reviewing my case, he requested a Gallium scan (the most detailed scan for NETS) and another CT scan. Last week, I met with him again to discuss the results and the news was fantastic! First of all, the Therasphere treatment was successful in destroying the large tumour on my liver. Equally exciting was the news that what had looked like a new tumour in my abdomen was nothing more than a harmless diverticulum, a bulge in the lining of my colon! There are other tiny growths that we will need to continue to keep an eye on with regular surveillance, but those don’t appear to have changed significantly. Since my cancer is incurable, this news is about as good as it gets and I’m hoping for a smooth ride for some time to come!

So, what metaphors should you use when talking to or about a cancer patient? It is, of course, valid for a person to speak about their own illness in any way they choose and their loved ones ought to adopt the same language as a way of reflecting those experiences. Simply take your cues from the patient and you won’t go wrong.

Lyrics: Battle Belongs, Phil Wickham

Choosing the right walking shoes

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Screenshot 2024-05-09 at 7.40.11 PMAfter writing about my 150 day walking challenge earlier this week and encouraging you to consider joining me, I thought that this would be a good time for a post about how to choose the right walking shoes. If you’re walking in comfy, but well-worn sneakers, you might want to consider investing in a new pair that are dedicated to walking.

The American Podiatric Medical Association recommends replacing your walking shoes every 600 to 800 miles (approximately 950 to 1300 km). Some experts advise replacing them even more often, so be sure to check yours from time to time. If they’re becoming worn or have lost cushioning, it’s time for a new pair. Brand-new, well-fitting walking shoes might even put a bit more spring in your step and encourage you to walk a little farther.

Because feet come in various shapes and sizes, it’s impossible to recommend a specific style or brand that would suit everyone, but there are some tips that can help you find a pair that are right for you. First of all, shop late in the day. Our feet tend to expand a little throughout the day, so it’s best to try on shoes when they’ve swelled a bit. Also think about what kind of socks you’ll wear on your walks. The thickness of your socks will affect how the shoes fit, so take them shopping with you. If you wear orthotics, be sure to take those too. 

Comfort and fit go hand in hand and are by far the most important factors to consider when choosing the right walking shoes. Choose a shoe that is lightweight and breathable. You want it to fit snuggly at the heel and through to the middle of your foot, but it shouldn’t crowd your toes. The toe box should have enough wiggle room for your toes to splay out a bit, but not too much. Make sure that there’s a finger’s width or about half an inch between the end of your longest toe and the front of the shoe. Don’t hesitate to try on several different brands and styles to find the one that is right for you. 

The insole of a good walking shoe should cushion each step and it should feel like it’s adequately supporting the arch of your foot. Look for a uniform level of cushioning, rather than a higher heel cushion. The outer sole should provide adequate traction. 

Check the shoe for flexibility and stability. Hold it by the heel and bend the toe upward. It should bend at the ball of the foot. Grasp it at the heel and toe, then twist. You should feel moderate resistance. 

Finally, take a walk around the store before you decide to buy to ensure that the shoes you choose fit well and are completely comfortable. The old idea that shoes need to be broken in doesn’t apply to walking shoes. 

Good quality athletic shoes can be expensive, but your feet are worth it. You are worth it! Consider these shoes an investment in your well-being. Then get out there and enjoy walking!  

My 150 day walking goal

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If you’ve been following my blog for long, you may remember that several times in the past few years I’ve challenged myself to walk or hike a specific distance over the summer months. The first time, back in 2020, I walked as part of a fundraiser for NET cancer research, but after that I recalled how good all that walking felt and how much having a specific goal kept me motivated. Last year, I challenged myself to walk 350 km between May 1 and October 31 and actually exceeded that by approximately 60 km.

Today, recognizing that I’ve been unusually lazy over the past winter and realizing how badly I need to get out and walk again, I decided that I would attempt to walk 300 km between now and my 72nd birthday on October 5, which happens to be exactly 150 days from now. (For my American friends, 300 km is equal to 186.4 miles.) Not only does having a goal motivate me, especially on those days when I’m feeling sluggish or just plain lazy, but being accountable to someone else is another driving force. That’s where you come in and the reason why I’m writing this post! 

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So why walk?

Walking has many benefits including:

  • It’s accessible, easy, safe, and free.
  • It reduces stress and decreases symptoms of depression and anxiety.
  • It improves heart health and reduces the risk of cardiovascular disease.
  • It increases blood flow and therefore improves energy levels.
  • It improves blood pressure and cholesterol levels.
  • It reduces the risk of some cancers.
  • It boosts the immune system.
  • It helps prevent the onset of Type 2 diabetes (which I already have).
  • It burns calories.
  • It promotes more restful sleep.
  • It improves flexibility and helps ease chronic pain and stiffness.
  • It improves brain function.
  • It’s a weight bearing exercise that reduces the risk of osteoporosis.
  • It has even been linked to longer life expectancy!

If you’d like to partner with me, I’d love to share this walking challenge with you. Just choose a distance that you think is reasonable for you and share it in the comment section below.

There are several ways to measure the distance that you walk. In and around town, I use MapMyWalk which allows you to create and save routes that you use regularly. All Trails gives information and distances for trails around the world and I use a handheld Garmin GPS to measure unmarked hiking trails. 

Your most valuable accessory

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What is your most valuable fashion accessory? I would suggest that it’s not an expensive piece of jewelry, a silk scarf, or an amazing pair of shoes. No, I would say that it’s your smile!

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Image: Reader’s Digest

A smile has a way of lighting up a room and making everyone feel welcome. It brightens your face and makes you appear more confident, friendly and approachable. In fact, the first thing we notice about a person is seldom the clothes they’re wearing. Several years ago, a survey for USA Today found that 47% of respondents chose a great smile as the feature that most attracted them to another person. Their eyes came second at 31%.

Apparently, smiling can have profound impact on your mental and physical health too . The simple act of smiling can improve your mood, reduce stress, boost your immune system, and help improve cardiovascular health by lowering blood pressure. What’s not to like about that?

Smiling is also contagious. During the year that we lived in Japan, I didn’t speak the language. I wasn’t able to converse with many people, but I made a point of smiling at everyone I passed. The reactions were interesting. Known as a publicly reserved people and especially shy about interacting with foreigners, many looked startled and some quickly looked away, but many faces lit up and smiled back at me. I liked to think that I added a moment of warmth to their day as they had done to mine. After all, a smile is the same in any language!

So, next time you go out, don’t forget to wear your most valuable accessory, your smile!

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