Ten years of blogging!

Ten years ago today I published my very first blog post! It was also the shortest post I’ve ever written and the message was very simple:

Richard and I have just accepted positions teaching conversational English in Japan. This is a one year commitment and we’ll be leaving in mid March. The main purpose of this blog is to share our adventure with friends, family and anyone else who’s interested.

Little did I expect to still be blogging ten years later! I anticipated that Following Augustine would only exist for the year that we would be in Asia. In fact, that’s why I chose the title. Augustine BeArce, a Romany Gypsy, was the first of my ancestors to cross the Atlantic Ocean from Europe and make his home in North America. 370 years later when I crossed the Pacific Ocean and settled for a time on the far side of the sea, it only seemed right to give credit to Augustine and the Gypsy blood that I inherited from him!

I’ve always been passionate about writing though and by the time our year in Japan came to an end, I knew that blogging was something I would continue to do indefinitely. What I didn’t know was what it would look like once I was no longer living in a foreign land. For lack of a better definition, I now refer to Following Augustine as a lifestyle, travel, and fashion blog, but one of my readers once called it a great advertisement for retirement!

Over the past decade, life has taken many unusual turns, some delightful and others deeply distressing. Following Augustine has been there through all the ups and downs.

We love to travel and the blog has recorded trips across Canada, into the United States, and to numerous other countries. Never in my wildest dreams did I ever expect to live in the People’s Republic of China though, but our five months there gave me plenty to write about. China’s internet censorship made it a bit more challenging to post from there, but thankfully, with the help of WordPress, I discovered a way to successfully break through or over the “Great Firewall” and continue blogging.

Cancer was never part of my plan either, but when it struck, the blog became a good way to process what was happening and to share it with friends and family. I’ve also used it as a way to raise awareness of NETS (neuroendocrine tumours), the little-known and often misdiagnosed cancer that I continue to deal with. My life is not all about my health, however, so neither is the blog. It’s about living life to the fullest in spite of all its challenges.

A couple of years ago, I became interested in fashion blogging and so the weekly Fashion Friday feature was born, not as a “look what I’m wearing today” narcissistic sort of thing, but as a way to connect with other women and to explore how the ways in which we present ourselves affect our lives. It has had the added benefit of ensuring that I write something at least once a week.

I am a Christ follower and I have fairly strong and not always popular or politically correct opinions on certain issues. I haven’t shied away from sharing those on the blog, but I’m committed to doing so with as much wisdom as God allows me, with integrity and with respect for those whose opinions differ from mine.

When I published that first post ten years ago, our daughter was expecting our first grandchild, so over the years five little people have appeared on the blog from time to time. I’m off to visit three of them this weekend and the other two for Christmas, so it’s possible that they might show up again soon!

What does the future hold for Following Augustine? I have no idea, but I’ve now written 882 posts and I don’t see them coming to an end anytime soon!

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On being radioactive

10991307_10153055708750915_6654881605691342497_nThough we often laugh and joke about it, there’s nothing fun about being radioactive two weeks out of every year. I don’t glow in the dark and I don’t have any special powers. I simply feel tired and have to limit the time I spend in close contact with other people. It’s not that bad really, but when I sit alone and watch Sunday morning’s sermon online and when my husband is out at a social event while I’m at home alone, it’s easy to start feeling a bit sorry for myself.

People often compliment me on my positive attitude and I think they’re right that it has a lot to do with how well my cancer battle is going, but there are moments when it’s hard to remain positive, when I’m tempted to invite myself to a private pity party.

For those who are new to my blog, I have neuroendocrine tumours (NETS), a little-known cancer that is often quite advanced at diagnosis due to the fact that its most common symptoms are very similar to more common ailments such as Irritable Bowel Syndrome, Crohn’s disease, lactose intolerance, asthma, and even menopause. Though it’s incurable, it is slow-growing and often treatable. I have the good fortune to live 2.5 hours by car from a state of the art treatment centre, one of the very few in North America that offer the latest and best treatment available for this type of cancer.

At this point, I am treated with radioisotope therapy once every six months. This involves an overnight stay at the cancer clinic followed by a week of semi-isolation at home. During that week I have to have my own bedroom and my own bathroom and I have to limit my contact with other people because I’m highly radioactive. I pose an especially high risk to pregnant women and children under the age of 12.

I had my most recent treatment on Wednesday. Scans the following morning showed that my condition continues to be stable. My cancer has not grown or spread. That’s exceptionally good news and when I start to feel sorry for myself, I have to remind myself of that!

The first couple of days of radioactivity aren’t bad. I spend a lot of time in the armchair in the corner of our guest room (which becomes my room for the week) or curled up on the love seat in my den. I’ve read almost two books in the past few days and drank copious cups of tea. By today, however, I’m beginning to miss human contact and I’m itching to be set free!

I did go for a short walk this afternoon. It’s a gloomy, grey Sunday afternoon in our very small town and the temperature is -5ºC (23ºF). Two vehicles went by, one at a distance and the other close enough for the driver to wave. Other than that, I didn’t see a single soul. Definitely no danger of radiating anyone! I could hear traffic out on the highway, my own feet crunching on the snow, and the occasional winter bird in the trees. It didn’t do a great deal to lift my spirits, but I’m sure the fresh air and exercise were good for me.

When I start feeling a little mopey, perhaps it’s a good idea to once again remind myself of the things that cancer cannot do.

What Cancer Cannot Do

Cancer is so limited…

It cannot cripple LOVE

It cannot shatter HOPE

It cannot corrode FAITH

It cannot destroy PEACE

It cannot kill FRIENDSHIP

It cannot suppress MEMORIES

It cannot silence COURAGE

It cannot invade the SOUL

It cannot steal ETERNAL LIFE

It cannot conquer THE SPIRIT

Author Unknown

It may leave me radioactive for a little while and feeling a bit sorry for myself. It may even eventually destroy my body, but as the poem says, it cannot conquer MY SPIRIT! 

As the old saying goes, “This too shall pass!” Two more days and I’ll be free again!

NET Cancer Day 2017

Net Cancer DayMy weekly Fashion Friday feature is taking a break today as I have something much more important to share. November 10 is World NET Cancer Day, a day set aside to raise awareness of neuroendocrine cancer, the disease that I’ve been fighting since 2013. Those of us who have been affected by NETS (neuroendocrine tumours) hope that for today our voices will rise above those of all the more well-known and prominent diagnoses. Today is our day to be heard by decision makers, health professionals and the general public. In addition to raising awareness, we want to encourage more funds for research, treatments, and patient support; and to advocate for equal access to care and treatment for NETS patients around the world.

So as not to disappoint those of you who came looking for a fashion post, here’s what I’m wearing today… my CNETS Canada t-shirt. I don’t usually wear graphic tees, but the message on this one is a vital one.

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If you don’t suspect it, you can’t detect it. 

So what’s with the zebras? Medical students are taught when hearing hoofbeats, to think of horses, not zebras. Neuroendocrine tumours are difficult to diagnose. Though they are the fastest growing class of cancers worldwide, their symptoms are usually vague and similar to more common health problems.  Many family doctors have never encountered a NETS patient. When 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. Hence, the zebra became our symbol.

As with all cancers, early diagnosis is important. Sadly it doesn’t happen often. If the initial tumour is found before any secondary growths occur, it can often be removed surgically and the patient is considered cured. Once it has spread, however, the disease is incurable.

NETS arises from neuroendocrine cells which can be found anywhere in the body. The most common types are found in the lungs, bronchi, thymus, pituitary, thyroid, adrenal glands, intestines, pancreas, appendix, and rectum. They may also occur in other areas including the ovaries, cervix, testicles, and spleen. NETS is a slow growing cancer that is often misdiagnosed. By the time a correct diagnosis is made, the cancer has often spread. In fact, 60 to 80% of NET cancer patients are diagnosed with advanced disease.

My primary tumour was in my colon. At the time of diagnosis, I also had three tumours on my liver and one in a lymph node. It was estimated that I had already had the disease for ten years when it was detected quite by accident! Off and on for at least seven or eight years I had been experiencing most of the common symptoms which include abdominal cramps, diarrhea, flushing of the skin, pounding of the heart, and wheezing or shortness of breath. Neither I nor my family doctor had any idea why.

Today coffee shops across Canada and around the world, including The Wooden Spoon here in Sedgewick, will be raising awareness about NETS by using special coffee cups bearing the slogan “Lets talk about NETS” and handing out promotional material to help educate their customers about the disease.

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What can you do to help? You can help us spread awareness by simply reposting this on your blog if you have one or posting a link to it on your Facebook page. Thank you so much!

 

 

Good news!!

Good news

Four years post diagnosis, there are times when I almost forget that I have an incurable cancer. It’s no longer the first thing I think of when I wake up every morning and I’m sure there are days when it doesn’t even cross my mind.

Then there are days like today; days when it jumps to the forefront again. This morning started with CT scans of my head, neck, chest, and abdomen. Several hours later, we sat down with my doctor to discuss the results. I had no reason to anticipate bad news, but we’re fully aware that at any time the treatment could stop working. New growths could appear or tumours that have shrunk could start growing again. Someday, we probably will receive that kind of news, but not today!

Today, my doctor called me a “poster child” for the PRRT treatment protocol that I’ve been on since September 2014. He’s as delighted as we are with how well it’s been working for me. The largest tumour on my liver is noticeably smaller today than it was six months ago. The other remaining tumours appear unchanged and there are no new growths!

Quality of life is an important factor in cancer treatment and Dr. MacEwan is always delighted to hear that mine continues to be superb. It’s only days like this one that remind me that I have cancer! The rest of the time I’m busy living life to the fullest and with utmost gratitude to my amazing medical team, my many faithful praying friends, and the God who promised to take care of me on this journey.

Ten years!

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At the end of this week, it will be ten years since Richard and I walked out of our Alberta classrooms for the last time and entered a brand new phase called retirement! Where did the time go? It amazes me to think that we’ve been retired for an entire decade already! Over the past few days, I’ve been looking back and marvelling at all the things we’ve done during that time.

I often say once a teacher, always a teacher. We knew that even though we were retiring, our teaching days weren’t entirely behind us. We’d long had a dream of teaching English overseas after we retired and we accomplished that by spending one year in Japan and a semester at a university in China. Those were amazing experiences and we treasure the memories and the friendships that we made! I’ve also spent some time doing online mentoring and we both volunteer with our local literacy program. I meet once a week with two young women, both members of the Old Colony Mennonite community that moved into our area over the past few years. They are fluent in English, but neither of them ever had the opportunity to learn to read or write, even in their own language, so I’ve been teaching them. Richard tutors one of their husbands.

We’ve discovered that there are no end of things to do in retirement, even in a small community like ours. Richard has been serving as the Deputy Director of Emergency Management for our town for the past few years, a volunteer position that involved quite a bit of training. He also serves on our Community Hall board. Because we come and go a lot, we hesitate to commit to too many activities that require us to be present on a regular basis, but we give our local food bank a thorough cleaning once a month and occasionally work a shift at the thrift store that’s operated by three local churches. In addition, we hold positions in our own church and participate in many activities there. Lately I’ve even had to say no to some opportunities because I felt that I was becoming too busy!

Two of our grown children were already married when we retired, but our family has grown over the past decade to include another daughter-in-law and five grandchildren! Though none of them live very close to us, being grandparents is one of the best things about this stage of life and we spend as much time as we can manage with our little ones.

The past decade has brought some surprises, some good and some not so good. We certainly didn’t anticipate becoming seasonal farm labourers, but I believe in living life to the fullest and I’m always ready to try something new. As a result, this city bred girl learned to operate some pretty big machinery and loved it! For several years, I drove tractor in the spring and combine in the fall as we helped a farmer friend with seeding and harvest.

Travel was always part of our retirement plan. During the first few years, we visited nine Canadian provinces and fifteen American states plus Japan, South Korea, Vietnam, Cambodia, Hong Kong, Macau, Saipan and Costa Rica. In 2013, I was diagnosed with a little-known incurable cancer which slowed us down a bit and keeps us from being out of the country for extended periods of time, but since that time, we’ve managed to tour Israel and visit Mexico twice. I’ve also been on a girlfriend trip to Las Vegas and we travel to Vancouver regularly to spend time with family. Last fall, we spent two weeks in Nova Scotia and celebrated our 40th wedding anniversary while we were there.

We continue to stay physically active. Golfing is a summer passion for both of us. We also love to hike and we recently purchased a tandem kayak. During the winter we keep active lifting weights, bowling in the local seniors league, and going to dances.

Writing was always something I always knew I’d return to in retirement. Though I’ve had one magazine article published and I’ve done some freelance editing, it’s blogging that I’m most passionate about these days. I love the opportunity it gives me to interact with my readers. Even my blog has changed over the past decade though. I originally started it to share our Asian experiences with friends and family back home, but I loved writing it and I’ve kept it going ever since. Though I still share travel stories whenever I can, it has morphed into more of a lifestyle blog that includes a weekly fashion post reflecting another interest of mine that grew and developed in my retirement years.

Perhaps that’s been the key to a successful and happy retirement… we’re still learning, growing, and exploring new interests. I am extremely grateful that we were able to retire as early as we did. I’m just now approaching 65, traditionally thought of as retirement age, and Richard is 67, but we’ve already been blessed with ten wonderful years of retirement. We loved our teaching careers, but as we watch our younger colleagues wrap up another school year and see their weary, stress filled faces, we don’t for one moment regret retiring when we did!

What will the next ten years hold, I wonder? Much will depend on my health, but at this point, I’m doing well. With a few restrictions, I’m able to lead a normal and active life. I don’t think we’ll be leaning back in our rocking chairs and putting our feet up anytime soon! There’s still a lot of world to see and new adventures await us!

Retail therapy

LogoI’ve never indulged in retail therapy. I don’t shop because I’m feeling lonely, stressed, depressed, or bored. I confess that the fact that I live 85 km (53 miles) from the closest mall might have something to do with that! On Tuesday, I travelled that 85 km to spend two hours sitting in a dentist’s chair. On the way, I stopped to have several vials of blood taken for post treatment testing. No one could blame a girl for adding a bit of shopping to a day like that, could they?

Just before I left home that morning, I checked my emails and discovered that Payless ShoeSource had a BOGO (buy one pair, get a second pair half price) sale starting that day. Of course, I had to stop in and check it out!

In my world, there are two kinds of shoe shopping. If I’m looking for shoes (or boots) that I’ll be doing a lot of walking or hiking in, I want quality, support and comfort. I’m willing to pay for that and Payless isn’t the place I usually go looking. If, on the other hand, I’m looking for something fun and I don’t want to spend a lot, it’s definitely my go to. I’ve actually been surprised, however, to discover that most of my Payless purchases have stood up well and have been very comfortable. Hopefully that’s true of Tuesday’s purchase! Here they are, the Fiona Pointed Toe Ghillie Shoes by Brash.

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I knew they were going home with me the minute I tried them on! They’re perfect for wearing with summer’s shorter pants. Here, I’ve styled them with a pair of capris that I bought off a sales rack in the middle of winter and the white sateen crop pants that you’ve seen several times before. You first saw the black lace top here.

Shopping Payless, especially their BOGO sales, is a bit like thrift store shopping in that they don’t always have a particular shoe in the size you wear. I was lucky to find this pair in my size, but I couldn’t find a second pair I wanted, so I bought a package of socks to take advantage of the BOGO savings. I can always use more socks, especially at half price. The shoes themselves were a fantastic buy. Marked down from $49.99 to $16, they actually rang in at $13! Bonus!

I’ll be back to town for more dental work next Tuesday and the Tuesday after. Hopefully retail therapy doesn’t become a bad habit!

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Not so rare after all!

November 10 was worldwide NET Cancer Day. In addition to writing my Let’s talk about NETS post, I read several other articles about neuroendocrine cancer that day and what I learned was quite astonishing.

When I was diagnosed with neuroendocrine cancer (NETS), I was told that it was rare and much of the literature about it seems to agree, but is it really? Is it actually rare, or is it just not very well-known?

You’ve heard of cystic fibrosis, right? And what about ALS (Amyotrophic lateral sclerosis), often called Lou Gehrig’s disease after a hall-of-fame baseball player for the New York Yankees who was diagnosed with ALS in the 1930s? If you hadn’t already heard of that one, I suspect that the famous Ice Bucket Challenge of July and August 2014 brought it to your attention. Unless you’re a fellow patient, however, I’m guessing that you’d never heard of NETS before you read about it here on my blog, but is that because it’s rare?

Let’s take a look at some statistics. I’m using numbers for the United States simply because they were the easiest ones to track down, but I’m assuming that the ratio would be similar elsewhere. In the US, there are

  • approximately 1000 new cases of cystic fibrosis each year
  • a little over 6000 new cases of ALS each year
  • an estimated 15 500 new cases of NETS each year

Do the math! That’s more than 15 times as many cases of neuroendocrine cancer as cystic fibrosis and more than twice as many cases as ALS! It’s also an average of more than 42 new cases a day or more than one every two hours!

So why is NETS not nearly as well-known as the other two diseases and why does that matter? It matters because doctors don’t detect what they don’t suspect and they don’t suspect NETS if they don’t know anything about it. Secondly, more research dollars go to higher profile diseases. According to the US Department of Health and Human Services, $49 million was spent on ALS research in the US in 2015 and $80 million on cystic fibrosis, but NETS wasn’t even on the report!

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I know you’d probably rather read about my travels or my Fashion Friday posts and they’re definitely more fun to write, but unfortunately, it falls upon patients like me to publicize and educate whenever and however we can. It might be easier if we had a Lou Gehrig, someone well-known to put a face to our disease, but that hasn’t happened yet. Our best hope so far was Steve Jobs, co-founder and former CEO of Apple Inc, but Jobs initially chose to reject his doctors’ recommendations and try alternative treatments, a decision that may have hastened his death in 2011. He was also very private about his condition which was, of course, his right, but he could have done so much good had he chosen to be a vocal spokesperson. The fact that the media, left in the dark by his silence, commonly reported that he died of pancreatic cancer rather than neuroendocrine cancer that originated in his pancreas, didn’t help our cause either.

Increasing awareness is a slow process, but I believe we’re making headway. In spite of the fact that it’s still not well-known, NETS is actually the fastest growing class of cancer worldwide! I believe that that’s because it’s being diagnosed more often and because improved treatments are allowing many of us to live longer. Our goal continues to be to raise awareness in both the medical field and the general public, so that research funds are made available that will lead to even earlier diagnosis and better treatment. It’s time for NETS to come out of the dark!