Cancer

Keeping Christmas simple

/ edebock / 10 Comments

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

/ edebock / 6 Comments

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!

 

My 12 year cancerversary!

/ edebock / 10 Comments

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

/ edebock / 7 Comments

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!

Celebrating wellness

/ edebock / 14 Comments

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

/ edebock / 4 Comments

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.

NET Cancer Day 2024

/ edebock / 4 Comments

ncd-logo-newI wish there wasn’t a need for NET Cancer Day and that I didn’t feel compelled to write about it again this year, but there is and I do. Those of you who have been reading the blog for very long might think that I’m  starting to sound like a broken record, but it’s just so important for people to become more aware of this frequently misdiagnosed cancer.

The incidence of neuroendocrine tumours (NETs) is on the rise and symptom awareness is key to earlier diagnosis and ultimately to better outcomes. Last year’s campaign slogan “Easily missed: Take a closer look at neuroendocrine cancer” was such a vital one that the NET Cancer Day campaign is reaffirming that message by using it again this year. More common than brain, ovarian or cervical cancer, neuroendocrine cancer continues to be frequently missed and misdiagnosed.

Globally, it takes an average of 5 years from initial symptoms to actual diagnosis; longer in North America. In my case, doctors estimate that I had had the disease for 7 to 10 years before it was diagnosed and based on symptoms, I’m sure they’re right. By then the cancer had already spread to distant parts of my body. Like many, many other NETs patients, my cancer was Stage 4 and no longer curable. Clearly, a greater awareness of NETs amongst the global community and especially the medical profession is needed.

The NET Cancer Day campaign has traditionally been focused on highlighting the common symptoms that are often interpreted as other conditions, but can also be signs of neuroendocrine cancer. These include facial flushing, abdominal pain, digestive problems, diarrhea, rapid heartbeat, chest pain, shortness of breath, wheezing, coughing, and/or persistent fatigue. People with NETs are often misdiagnosed with more common conditions such as anxiety, menopause, Irritable Bowel Syndrome, gastritis, or asthma.

poster

I’m not able to give you an update on my own health today as I’m presently waiting for the results of lab work that was done this past week and I’ll be going for CT scans again on Wednesday. Instead, I’ll tell you a bit more about what I’ve been involved in since last NET Cancer Day.

Since very early in my cancer journey, The Canadian Neuroendocrine Tumour Society (CNETS) has been a valuable source of information and support. When the opportunity to get involved as a volunteer member of a newly forming patient advocacy advisory board came to my attention, I knew immediately that that was something I wanted to do. It was time for me to start giving back.

After meeting in Montreal in April for an “advocacy bootcamp” with a prominent Canadian health advocate and policy consultant, we came away with a list of priorities and tactics in the areas of education and awareness, treatment and diagnostic access, and research. With two other members of the board, I’ve been working on a graphic representation of both the current and the ideal pathways to diagnosis for neuroendocrine patients in Canada which we hope to use to inform patients, medical practitioners, and health authorities. This fall, we were fortunate to have our project approved for funding by the International Neuroendocrine Cancer Alliance (INCA) which is allowing us to work with a patient-led consultancy group out of Germany to take our initial work to a higher, more professional level.

Over the past few months, in addition to the advocacy board work, I’ve also been involved in an initiative with Ipsen, the pharmaceutical company that produces the medication that I’m injected with every 28 days, to improve the patient experience with that drug.

These are baby steps in the overall work that needs to be done to improve diagnosis and treatment of neuroendocrine cancer, but I’m happy to be doing what I can to raise awareness and move the work forward.

Screenshot 2024-11-09 at 7.19.36 PM

Another cancerversary!

/ edebock / 17 Comments

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!

Ribbon Symbol

The notebook

/ edebock / 8 Comments

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.

IMG_7130

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.

IMG_7132

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.

IMG_7134

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.

IMG_7137