BC Becky

Never thought I'd want to be a breast cancer survivor

Category: Opinion

  • Acure – a product review

    I first learned of Acure products when I received a free sample in the welcome tote – given to me the first time I attended a support group session at Bay Area Cancer Connections. I had just been diagnosed with breast cancer and was preparing for chemotherapy. I loved the cell stimulating body wash so much that I bought a couple of tubes of it. It was my indulgence when I got in the shower. I used the smell to trigger an escape from all the bad stuff happening – it helped me feel pampered.

    When I was looking into monetization of blogs for the Should I blog course that I designed (see http://shouldiblog.org), I discovered that Acure offered bloggers a sample pack in exchange for providing a product review. I immediately signed up. I love that their products are all natural and vegan.

    They kindly sent me a sample of several of their products. Unfortunately, their first shipment never made it to me (the package wasn’t actually delivered). They were nice enough to send out a second package! And with that I have several products which I shall happily tell you my thoughts on – note that I delayed this post so long that they have different packaging – but the products are still amazing.
    Photo & Video Sharing by SmugMug

    I have been using these products for the last three months. I was surprised at how sensitive I am to the smell of products. I loved the Argon Cell Stimulating Body Wash because I loved the smell of it. I have since shifted to the Sensitive Skin Body Wash – however, I’m not as keen on the smell of it. I’ve also tried the Sensitive Facial Cleanser – again, not too keen on the smell – if you like the smell of peonies, you may very well enjoy this face cleanser. My only objection to it is the smell.

    What was really a hit for me was the Leave-In Conditioner, and the Argan Oil (as an aside, I also like that it is sustainably purchased from a women’s cooperative in Morocco). I’m going to be ordering myself some more! The Leave-In Conditioner has a wonderful scent, and helps to control my crazy chemo fizzy hair. I use the Argan Oil on my face and sometimes on my scars. I also have some small samples of the Marula Oil. I find the Marula and Argan oils work about the same, but I prefer the smell of the Argan oil. What is especially nice about the oil is that you can use it on your face, on scars, and on your hair – meaning one less thing to pack when travelling. I love it so much that I need to order more!

    This post was sponsored in part by free samples provided by Acure. These are my unbiased opinions of the products I received. 

     

  • Comparisons

    I’ve come across friends’ posts in both my cancer world and my non-cancer world were people are comparing themselves to others in such a way that makes them feel less of themselves.

    The first was in a cancer post. Someone who had a smaller cancer, which had not spread, such that treatment didn’t need chemotherapy. She was comparing herself to others within the community who had much more advanced forms of breast cancer. That comparison made her feel like her experiences were not significant. However, a bunch of us jumped in to let her know that her feelings were real, her concerns were real, and her experience sucked too. There is no value in comparing because you’ll always find someone who is worse off, that doesn’t make your experiences or feelings any less valid.

    This also happens frequently within the cycling community. Riding 40 km is a huge accomplishment, especially for those who don’t normally bike. But for those who are cycle tourist and are accustomed to 100+km ride days, 40 km feels like nothing. It is no less of an accomplishment for the person who rode 40 km for the first time. Oh how I am looking forward to being able to break the 20km boundary again, and some day, I too shall be able to ride 40km, and maybe even 60km.

    My point is, we have this nasty habit of comparing ourselves to others, which we use to devalue our own experiences. If you catch yourself doing it, remind yourself, that your experiences are real, your experiences are valid, and your accomplishments are significant!

  • Empathy Cards

    These new empathy cards by Emily McDowell have crossed my social media stream several times in the last few days –http://emilymcdowell.com/collections/cards/Empathy-Cards.

    I think they are the most awesome cards to send to someone who is experiencing cancer, so I thought I’d share the link here. As a cancer survivor, she really does a great job of giving people in our lives some tools to say things when they really don’t know what or how to say them … take a look, it’s OK to giggle, but I also encourage you to really think about why these cards resonate so much with people going through cancer treatment.

  • Routine breast cancer screening …

    In today’s Washington Post there is an article by Karuna Jaggar entitled “Stop routine breast-cancer screening. Science has shown they don’t save lives“. As someone who just spent the better part of a year being treated for breast cancer, you’d think that I would disagree with this article – but you’d be wrong. You see, I don’t believe in making general population policy decisions based upon emotional reactions to individual cases. I think there is some pretty good evidence that needs to be considered here.

    The thing that scares me most in the article is this paragraph:

    Mammography screening, which has been widely promoted for women in their 40s since the 1980s, is failing to meet our expectations of extending women’s lives. Routine breast cancer screening was supposed to prevent women from dying of breast cancer, but studies have shown that the “early detection saves lives” mantra just isn’t true for breast cancer.

    It scares me because it is important – and yet so much money is spent on awareness campaigns that are all about “early detection”. The whole frickin’ month of October is all about making things pink so that people learn more about breast cancer. Awareness made sense 30 years ago when breast cancer was a taboo subject. It no longer makes sense to be wasting money on awareness campaigns when that same money could be funneled to research that is actually saving lives.

    For me personally, I had my first mammogram after I felt a lump. My new US doctor had ordered one three months earlier to get a baseline, but I knew that screening in Canada didn’t typically begin until age 50. I had heard a CBC documentary on mammography several years ago (I think it was on Ideas back in 2011, but I could not find the link – there is an article from 2011 about it here) and it has also recently been in the news (see Breast cancer death rates in Canada didn’t improve with mammograms). I had heard that early detection does not change outcomes. Early detection increases 5-year survival rates, but doesn’t change death rates. What that means is that detecting it early means that you live with it longer – it doesn’t mean that it save lives.

    I know that I cannot be 100% certain of things, but I’m pretty sure that I did not have cancer when my doctor ordered the mammogram back in January 2014. Had I done the test, I likely would have been all cleared, and when I felt the lump, I likely would have dismissed it for at least an additional week or two. I had other symptoms (change in discharge) that would have eventually led to me to my doctors office.

    One of the reasons I dislike the “early detection saves lives” mantra is that it makes women with late stage disease feel guilty. For that matter, it makes all women feel guilty. We all go through the process of asking ourselves “What if I had caught it earlier?” It makes women with cancer feel like they failed to do something. It puts blame on the cancer patient. The problem is, that catching it sooner doesn’t seem to matter with breast cancer. It may with other cancers, but it doesn’t with breast cancer.

    The exception to this rule may be for those who have a family history of breast cancer and those with genetic mutations – but the “early detection saves lives” message isn’t about people with a family history, rather is it sent to the general population. 80% of people who get breast cancer do not have a family history. And honestly, we don’t know yet if early detection for those with BRCA genes actually makes a difference in their survival. We haven’t been able to detect the gene for long enough to know if prophylactic surgery actually increases overall survival. It is too soon to tell. Note that I do not have an opinion either way on what one should do if they have a BRCA or other genetic mutation that increases their risk. My only opinion is that they should have the choice of what they wish to do.

    So, I am happy to see more news articles about the controversy over routine mammography screening. I’d love to see organizations like the American Cancer Society stop wasting money pushing campaigns to increase ineffective screening tests when they could be spending that money on funding research to improve treatment options, which in turn actually saves lives.

     

  • Mini-Med School

    One of the links that was shared with me after the #et4online conference was for Canvas – http://canvas.net. In looking into what was offered on the platform, I came across this course offered by the University of Colorado’s School of Medicine called Mini-Med School.

    Last year, I had heard from a friend about a similar course offered at the University of Ottawa (in person and for a fee). It sounds rather interesting, but I wasn’t willing to pay for it – and I don’t really have the ability to attend a class in person. So when I saw that this was available for free – I signed up.

    I’m in no way considering going back to school to study medicine. I am taking the course because I think it will help me understand my doctors better. I think it will help me communicate more effectively with them. I think it is a great stepping stone to being an Engaged Patient.

    And so, starting June 8th, I’ll be listening in on the classes. I’ll be looking at the design of the course to see how effective it is, but what I’m most interested in is the course content itself. I’m particularly interested in Week 7 which covers Cancer Biology.

    Anyone wanna join me? The course is FREE – sign up here – https://www.canvas.net/browse/ucdenver/courses/mini-medical-school-1

  • Blog Impact Survey – a Reminder

    Hi everyone,

    Just a quick reminder that I’m doing a study on how breast cancer blogs impact those who read them. There is little or no research on the impact of blogs have on the readers of the blog – more is done on the impact to those who write them.

    So if you are reading this now – please take a couple of minutes to complete the survey. The more detail you include in the written parts, the better.

    Here is the link: http://fluidsurveys.com/s/blogimpact/

    Thanks,
    Rebecca

  • Coping with abundance

    Coping with abundance. In this case, it is an abundance of things to do and not nearly enough hours in the day to get them done.

    When I first was diagnosed, the answers became clear. I prioritized exercise over everything else. I only worked on projects that I enjoyed doing. I let everything else drop. I gave away contract work – my lack of focus on such things meant that I would not be able to complete things.

    Now, I’m starting to undig myself from the hole in which I am in. In some ways, it is like being encased in an egg shell that is the disease. As I am being reborn, I crack open different parts of the shell – and with each crack a whole wave of new information flows my way. New opportunities, and new things to compete with my limited time – An over abundance of things.

    I am happy to report that I did successfully break through the procrastination yesterday. I started on one of the contract projects – however I ran into technical issue that stumped me for the rest of the day (and even stumped hubby – so I don’t feel so bad about it now).

    I watch as interesting things cross my social media streams. So many new MOOCs (#rhizo15, #GoogleOnAir, …)  that seem interesting and would be great to participate in. I’d also love to have the time to learn more about mobile application development. I am looking inward at myself and trying to figure out where I have been successful in the past, what I enjoy doing regardless of my level of success, where I want to go in the future, and how those two things could possibly intersect. I’m trying to not spend too much time on things that don’t really work for me, things where I feel like my contributions are not valued. I want to avoid the banging my head against a wall feeling … and yet, if I don’t push myself to try some of these new things, if I don’t allow myself to sometimes fail, then I will not grow … and I will not find the opportunities that do work. With success comes the willingness to fail …

    So, I’m now trying to figure out how I navigate through this abundance without feeling like I’m aways behind. How I can live in the moment, and be productive, and still have the time for the things my body needs. Exercise is still my priority (or at least it will be when this cold finally goes away – it is loosening its grasp on me so I anticipate that by next week I shall be free of it). I need to get my body strong so that I have more endurance for getting the activities done that require mental focus. For now, I’m dealing with the abundance in triage mode – what must be done today versus what can wait until Monday.

    Tomorrow, we head up to Northern California for the Casting For Recovery retreat. I say we, because hubby is driving with me, but he isn’t invited to the retreat. His plan was to camp, but they just snow up there! So, we are in for a cold weekend retreat. In some ways, that will feel nice – we missed winter this year (sorry to all my Canadian and East coast friends who are still buried in it). I am both looking forward to and apprehensive about the retreat. I hope that it is a healing weekend, rather than one that opens wounds. Crossing fingers.

  • Support groups and medical tests

    I’ve talked previously on the double-edge sword that can be a support group meeting. Support groups give you a space to share your thoughts and frustrations. They can be a place of information gathering, to help you better know what questions you should be asking your doctors. But support groups can also be difficult. They can be a place where you find yourself questioning your care. Whey didn’t my doctor order this test or that test? What is a ‘normal’ duration for follow ups? The meetings can leave you thinking that you are not getting the best care possible.

    This is especially a challenge in an area and culture where we do a lot of tests. A lot of the tests that are done are completely unnecessary. Tests are done because the patient requests it, and the insurance company pays for it, so why not have it? This of course is one of the reasons for the high cost of healthcare. It is also one of the reasons why some cancers are over-treated.

    I saw a specialist today (gynecologist). Because of all the discussion in various support groups, I was very worried about my risk for gyne cancers. I was worried about whether or not I was in menopause and how that might effect my health. Most of the breast cancer chemotherapy treatments cause a temporary menopause which is often called ‘chemopause’. It can last for months or years after chemotherapy. Then the hormone therapy that I’m on (tamoxifen) can also cause menopause in some people (but not everyone). There were concerns – many of which came from the various discussions at support groups, although others were from my history. I learned that my breast cancer does not increase my risk for gyn cancers (I have no genetic predisposition). I learned that I didn’t need to worry about a lot of things that had been concerning me. I learned that there was no point in measuring whether or not I’m actually in menopause, since it will not a change any treatment decisions (I kind of wish my oncologist mentioned that – as it was a big question I had lingering – I wondered why if everyone else was being tested, why I was not). And that is the key point of this post – support groups can in some ways encourage people to ask for various tests, but if the test doesn’t affect a treatment decision, then it is an unnecessary test. And with each test there are risks – unnecessary exposure to radiation, false positives, patient discomfort/inconvenience, additional cost, etc. Medical tests of any kind are not side-effect neutral – especially when you include mental health and financial health as potential side effects.

    So I am very glad for my appointment today. I’m happy to learn that I’m not at greater risk than the general population my age for ovarian cancer, and the tamoxifen risk for uterine cancer is low but it is also a cancer that shows clear signs (unexpected bleeding). Treatment is not nearly as dramatic as for ovarian or breast cancer. I’m glad that the gyne doc did not find anything seriously wrong – just stuff that can be attributed to ‘normal’ women with pre-mature menopause and tamoxifen side effects – nothing serious – no signs of additional cancers … deep breath … feeling much better now.

     

  • It’s all in a name – Patient Safety #medx

    At the hospital yesterday, the nurse practitioner who saw me during my hospital stay back in December remembered that I am sometimes called Becky. When she called me Becky it felt so out of place. It didn’t fit. At the time, I could not articulate why.

    All the medical assistants and nurses in the pre-op area, and even the doctors that I don’t know, call me Ms. Hogue. Actually, Scott commented that he needs to remember when I’m in hospital to answer to Scott Hogue (hopefully he won’t need to remember that again anytime soon). Those that have been my doctors for any significant amount of time call me Rebecca (or Ms. Hogue). They don’t call me Becky. Even those that read my blog don’t call me Becky.

    I use the name Becky in informal settings – with close friends, at church, and on my breast cancer blog. It feels right in this setting. At school, it felt a little awkward when my PhD friends made the transition from Rebecca to Becky – in some cases friends have not made that transition. It isn’t a measure of closeness either – just that some call me Becky and others call be Rebecca.

    My preference for Rebecca in formal settings is all about my initials. You see, I’m not BJH, I’m RJH. It is rather unfortunate that the shortened form of my name does not use the same initials. People from other cultures don’t always get that Becky and Rebecca are the same name. In academia, initials matter, because when you publish your articles are published using your first and sometimes middle initial. I am RJ Hogue. I like the initials RJH – they represent me. Funny story though, my parents named me Rebecca Joanne so they could call me “BJ”, but then never really did. I’ve been Becky-Jo, and some family members still call me Jo or Jo-Jo, but I haven’t really ever been a BJ.

    On the car ride home from surgery last night I realized why it felt so wrong that a nurse would call me Becky – it is actually a patient safety issue. Nurses that don’t know me almost always call me Ms. Hogue. This isn’t just a formality, it is a way to ensure they are treating the correct patient! Every time they use my name, they are providing a check that they are giving the correct care to the correct person. When they read my wrist bands, they see Rebecca Hogue – they do not see Becky Hogue. The hospitals online records do not use my nick-name, they use my formal name. I’m sorry that I was not able to articulate my discomfort with being called Becky at the time, but now I understand where that comes from. Now I know that it is a safety issue, and that it is most appropriate that in a hospital setting I am Rebecca Hogue.

  • Mental health, #bellletstalk, and pink ribbon campaigns

    Yesterday was #bellletstalk day – for those who are not in Canada, it is a day that the major telephone provider encourages people to talk about mental health, and donates money (e.g. 5 cents per tweet or text) to mental health charities. It has been criticized here by Torquil Campbell as purely a marketing stunt and compared to Pink ribbon campaigns for cancer.

    Here is the thing. It is different. Yes, it is still cause marketing, but the big difference is that it actually promotes awareness! Unlike many pink ribbon campaigns that are intended to indicate that you support a cause but really just help sell product, they often provide no education about breast cancer – they are not raising awareness, they are selling products. They teach nothing. On the other hand, Bell let’s talk has caused many different bloggers to talk about mental health – and to tweet out their links. These bloggers are actively providing the public with information about mental health – perhaps the Huffington Post should look at promoting some of THOSE tweets / posts!

    In my world, I’m seeing what appears to be an interesting ripple effect, such that for the last two weeks many different people (many not Canadian) have been talking about mental health issues on their blogs – this my simply be coincidence – but I find it a particularly interesting correlation.

    So, I must respectfully disagree with Torquil Campbell – Bell Let’s Talk day is actually encouraging people to talk about mental health, and that’s a good thing!

css.php