BC Becky

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

Tag: Identity

  • Health (illness) bloggers

    Health (illness) bloggers

    In my literature review for my research I came across a great article (Keating & Rains, 2015) on the social support health (illness) bloggers receive. The article does a good job looking at social support of bloggers over a three year period.

    One of the things that came clear in the article is the use of the term health blog rather than the term illness blog. It has really got me thinking. A lot of bloggers shy away from the term illness blog because of the negative connotation around it. My immediate thought was the opposite of illness blog is wellness blog, but the term wellness blog is already used for those who are promoting wellness (e.g. diets, exercise routines, etc). Although the health (illness) blogs are written by someone who is experiencing illness, the focus of the blog is often the personal journey – and that journey is someone trying to figure out what health looks like for themselves. I do like the more positive connotation that health blog implies.

    I pulled out the following findings from the article:

    “The results indicated that changes in support available from blog readers and from family and friends over the course of 3 years were significant predictors of changes in bloggers’ well-being. Increased support availability from bloggers’ family and friends was associated with a decrease in bloggers’ feelings of loneliness and an increase in their feelings of health self-efficacy” (Keating & Rains, 2015, p.1454)

    The article makes mention of the idea of strong-ties and weak-ties. Strong-ties would be those with close family and friends. These are the people you can call anytime. They are your primary support. Weak-ties are those of acquaintances. They are not necessarily your close friends, but they still provide support through your experience. In this case, bloggers often have weak-ties with other bloggers. These weak-ties also help in increasing the feeling of support and decrease feelings of loneliness. I think we need both.

    “The results also demonstrate the benefits of blog reader support and suggest that this type of support can serve as a unique resource about and beyond strong ties. After we controlled for changes in support available from family and friends, change in blog reader support was associated with decreased health-related uncertainty. Bloggers who reported an increase in support from blog readers across the two measurement periods also felt that their health condition was less unpredictable” (Keating & Rains, 2015, p. 1454)

    What really resonated with me here is the idea that reading blogs helped to make my experience with breast cancer treatment less unpredictable. I was able to read a lot about people who had experienced the same surgery and breast reconstruction – so I better understood what my experience might be like. You cannot fully predict your experience as each journey is individual, but it really does help to have some general ideas of what you might experience as well as some tips on how to better cope.

    “In addition, the findings suggested that bloggers who perceived themselves as being in better health at the first time point were less likely to continue blogging over an extended period of time. It could be the case that those who evaluated themselves as being in better health were less likely to perceive value in continuing to document their experiences” (Keating & Rains, 2015, p. 1455)

    The idea that we blog less when we are healthy is something that I’ve definitely seen and experienced. We often feel like when things are going right we have nothing to say. A blog post that says “today was normal” does not feel that interesting, and yet, it is an important thing to say. It is really important to celebrate the good days, so that the blog is also providing encouragement to other patients. When cancer bloggers stop blogging we assume one of two things (1) they are healthy and don’t think they have anything interesting to say, or (2) they have died.

    “Through connecting authors with individuals who are coping or have coped with a similar condition, blogs appear to be a particularly useful resource for helping individuals to better understand their illness experiences” (Keating & Rains, 2015, p.1455)

    As a blogger, and one who reads blogs, I completely agree. Reading other blogs did help me better understand my experience. Overall, I did find that this particular study aligned with my experience as someone who both authored and followed breast cancer blogs. Now I just need to get into the habit of using the term health blogger rather than illness blogger.

    Reference

    Keating, D. M., & Rains, S. A. (2015). Health Blogging and Social Support: A 3-Year Panel Study. Journal of Health Communication, 20(12), 1449-1457. doi:10.1080/10810730.2015.1033119

  • Reaching out

    It is difficult when you are new to someplace to start to reach out and meet new people. It is especially difficult to reach out when you have cancer (and it is obvious).

    When I first moved to California, I spend a fair bit of my time trying to make connections with people here. I joined a couple of “meet ups” and I went to church. I was making a real effort to meet new people and make connections. Unfortunately, after diagnosis that stopped. I did meet new people, but mostly they were related to my cancer diagnosis, rather than me (although I have to say I’ve made at least one friend through the cancer process). It has been very difficult to even think about going back to even the things in which I had already been doing, never mind doing something new.

    After my first service at the Unitarian Church in San Jose,  I decided we would give it a try in the fall when they went back to the regular church schedule. Like many Unitarian Churches, their summer schedule involved special lay led worship services, which are not always easy for new comers. However, shortly after the service I attended in May, I was diagnosed with breast cancer. I found myself wishing we had reached out to the congregation sooner, so that we would have had the support that comes with being a member, but also, found myself afraid to go to the congregation, as now I wasn’t just a normal person off the street, I am someone who is coming with a need (or at least a potential need).

    To help make the transition, I did ask our minister from Ottawa to make an introduction. That way, when we arrived, we would not be complete strangers to the church. But still, I was very hesitant. I certainly wasn’t willing to go alone to service – it was not optional that my husband join me. Part of me felt the connection to this congregation the first time I attended back in early May, but part of me was afraid to introduce myself to a new community. How do I even begin to say who I am now? How is my headscarf not an elephant in the room? If (when) we need help, how will be able to ask for it, having not first arrived in a position to give?

    So today, when we finally were in town on a Sunday (another challenge with reaching out is that we often go sailing or camping on the weekends). We made the leap and went to church. Truthfully, church went well today. The service was good and the people were really welcoming. We happened to attend on a Sunday where they had a special lunch for new people – so we stayed and got to meet a few people and the two ministers in a much smaller group setting. I was struck by how similar the people are to the people at church in Ottawa – they are all Unitarians after all! Although in the small group I did choose to disclose that I had cancer, I didn’t feel like it was something that was a barrier. I could have chosen not to say anything, and people would have just listened to what I had to say (we were sharing a bit about our spiritual pathways). In hindsight, I didn’t actually share that much about my spiritual path because I was so focused on getting the words out of my mouth … “shortly after I moved here, I was diagnosed with breast cancer” … I cannot remember what I said after that, but I quickly finished off my sharing and allowed the conversation to move on to the next person. And that was it. I felt accepted for who I was, and where I was, and no pressure was placed on me (or us). We were encouraged to get involved to the level in which we felt comfortable. Actually, as far as welcoming goes – this congregation did a pretty darn good job.

    So, we shall reach out a little further and join the monthly potluck supper group. It is a chance to meet the dynamically different people involved in the congregation in a small group setting – with no pressure to be anything except myself. This reminds me why I’m a Unitarian Universalist 🙂  … maybe on Friday I’ll reach out to one of the meet up groups that I was a part of before my diagnosis …  but I’m not sure I have the strength/courage to do that just yet, we’ll see.

  • My Buddha Belly

    It may sound dumb but one of my biggest worries about not getting reconstruction is that I’ll look funny. I’ll have a flat chest but a buddha belly. I’m more scared about the buddha belly than I am about the flat chest.

    I know my choice for surgery. I know I ‘want’ a double-mastectomy. Want is such an odd word here – need might be more appropriate. I know I do NOT want to be hacked up and left oddly deformed, which is what a breast sparing lumpectomy would do. I also know that I do not want radiation. My skin is so very sensitive, that the idea of radiation burns freaks me out. So, for me, the best option is the double-mastectomy.

    I also know that I do not want to go through 2-3 years of additional surgeries. When you are first diagnosed with breast cancer, the surgeon presents you with one bit of “good news”. That “good news” is that insurance is required to cover reconstruction. What they don’t tell you is that reconstruction is not easy. You are not reconstructing healthy breasts. It isn’t a simple “boob job”. Reconstruction happens after they remove parts (or all) of your breasts, and then use radiation treatments to make sure that the cancer is gone. So they begin reconstruction with less than ideal material – you are not starting with healthy breasts, you are starting with damaged breasts. The reconstruction process can (and usually does) involve several additional surgeries, all done under general anesthetic. Each brings in new risks of infection and complications.

    Maybe, if I had a small mass in one breast, I might opt for a simple cosmetic surgery that in essence evens out my breasts – maybe. But I don’t have that option. I have two areas of cancer in my left breast, one rather large … which doesn’t leave much to work with. Plus I have cancer in the right breast. So radiation would mean radiation on both sides – a double whammy.

    So, for me, the best possible outcome is a single surgery – double-mastectomy with nice clean matching / symmetric scars. No extra lumps and bumps, but nice and flat.

    That much I know. But what scares me is the buddha belly. I have a great body image right now. I’m happy with how I look. I’m pretty sure I’ll still be happy without breasts (they are trying to kill me after all). But the belly … now that might be the challenge. I will need a new identity – perhaps after BCBecky  (Breast Cancer Becky) I will become BBBecky (Buddha Belly Becky).  Maybe if I can find some pride in that identity, I can be happy with my new body image. [i’m laughing through my tears as i write this].

    What also scars me is metastasis. So far, all signs are that I do not have node involvement. We won’t know until after surgery. The first line of treatment for node involvement is chemo – which I’m already doing. The second line is radiation. So, if surgery finds node involvement, I may need radiation (ugh). Once that is determine, we then start to look beyond the breasts for spread. Women can live for years with metastatic disease (like 10 years). Metastatic disease is often treated with chemo that is designed to slow the spread of the disease, but the quality of life with sustaining chemo scars me. Chemo is hard. I can do it now, because I have hope that it means that when I’m done with chemo and surgery that the disease will be gone. I watch other women live with metastatic disease and go through chemo so that they can live a little longer, mostly to watch their children grow up. For them, the pain, the yuckiness of chemo is worth it. I don’t think I could do that. For the first time in my life, I truly appreciate what quality of life means. I cannot see making myself feel awful (chemo) just to live longer feeling awful the whole time. I do not have kids, I do not have a reason to want to hold on. And I could not bare to have Scott see me suffer for years just to live an unhappy life. Now, this isn’t something I need to worry about now. My prognosis doesn’t look like that … from all signs I do not have metastatic disease, but these are thoughts that I do have … and I promised myself when I started this blog that I would write these thoughts and share them, regardless of how difficult they might be read or write.

    So, here is to living a long healthy life as Buddha Belly Becky … whoever that may be!

  • Transitions matter

    Talking to my friend Stacey this morning, and reflecting on the BCC (Bay Area Women’s Cancer Connections) Young Women’s Group for those in treatment and post treatment, I see a need for some form of “graduation ceremony” or “bridging ceremony” .

    At the BCC Young Women’s group, what I noticed was a very large group, where many close connections had been made. But also, the group was too big for those of us who were new. It was a bit intimidating, but also in order to give each person the 10-15 minutes they needed the group ran over 2.5 hours – which if you are actively in chemo treatment, is just plain exhausting. I had to choose not to attend because I couldn’t bare the thought of being there that long right after treatment.

    I struggle with the group being both “in treatment” and “post treatment” because they have another group which is a survivorship group. But what I saw was that with young women the actual post treatment is a long time. Treatment isn’t just surgery, chemo, rads .. it can involve several more surgeries and lots of follow ups. It is almost like they need three groups, one for those of us “in treatment” – cancer warriors as I like to refer to us. But I also see the need for another group to help those who have moved beyond that “in treatment” stage who are still fighting the issues of reoccurrence and addition proactive surgeries. So I see the need for the group, but also I see the need for people to make the transition to other groups, post-treatment, and survivorship, but there is no mechanism that I see to encourage that transition. Without that gentle ‘kick’ to move from one group to the next, the initial group doesn’t provide the support it needs to provide to the young women who are newly navigating the experience.

    In my discussions with Stacey this morning, I heard her desire to not be seen as “cancer Stacey”, but rather some new “Stacey” who isn’t first and foremost someone surviving Cancer. Again, I see this as a huge transition. It is a graduation of sorts. Not all women make that transition at particular time, but at some point the transition usually happens. For me personally, I’m looking to the Avon Walk and next fall when I formally re-emerge in into my thesis process as that transition. In the spring, I will begin by attending academic conferences, where I’ll still clearly be Cancer-Becky – as I’ll be hairless, and I may even be presenting on topics relating to being a breast cancer blogger. But in the fall, I will be writing my dissertation, and reporting on my life before cancer. I won’t be writing as “cancer-Becky” I’ll be writing as Ed-Tech Rebecca.

    Similar to working through the PhD process, it is important to celebrate the transition we make. Some of them are easily identified (e.g. passing comprehensive exams, getting your proposal accepted, the last day of chemo!). Others are more mental transitions, that take time … but when we are ready to self-identify and make those transitions, it would be so much easier if there were a more formal way to make that declaration – to celebrate the change.

    So Stacey .. if you are ready to make the transition, how do you want to celebrate it?

  • My bald head

    There are times when I find myself wanting to cover my head in something stylish – and I like looking good. There are times when I run out to take out the garbage and I cover my head so as not to scare or make uncomfortable anyone who I might happen to cross paths with in the corridors of the condo.

    Today, when I was out sailing, I mostly wore a buff and my Tilley hat.
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    I usually wear my Tilley hat sailing, so anyone who has seen me before would not notice any difference. There was a brief moment when I took my hat off for a picture – cause I really wanted a picture with the waves and my bald head – mostly for posterity. But I also wanted to feel the wind on my head. At this point, it was easier to put my buff and hat back on, as I needed my hands to hold onto the boat!

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    But, towards the end of the sail, when it was a little less windy and cold, I found myself wanting (craving) to talk off my hat so I could experience the feeling of the wind on my skull. I love the feel of the wind on my bare head. But I didn’t. I was afraid of how the people around me would react. I was not afraid of showing my bare head, but I didn’t want to make others feel uncomfortable.

    When in the car, I often strip off my head scarf. It is either too hot, and I want to cool down, or I’m on a slower road and I want to drive with the windows down. Again, that feeling of breeze on my bare skull is delightful. When I’m in the car, I’m not worried about how my baldness might make others feel (even when stopped at intersections). I’m conscious about it, but not worried about it.

    When I had a shaved head, I didn’t worry about it. I often went out without covering up. But now, my head is patchy. It is mostly bald, but still has some patchy bits of hair. Sometimes when I swim, I don’t worry about it and just go bare. Last time I swam, I wore my swim cap. I was OK with changing from my buff to my swim cap at the pool, and I even used the pool shower and exposed my naked head (but found myself hoping that when someone walked by that they didn’t look my way). But I didn’t walk to or from the pool with a bare head.

    So I’m of mixed feelings right now. There are times when I want to look fashionable that I am happy to have my head covered in a pretty scarf/buff/whatever. It is a part of the outfit and actually dresses up what I’m wearing. However, there are times when, I would rather not bother covering up. Although, from a practicality perspective, I do need to concern myself with sun protection. My bare head cannot go out in the sun for any length of time, but it certainly craves being exposed for short periods of time (and I do hate wearing a buff under my bike helmet, but I need the sun protection).

    So I wonder, how much should I worry about what other people might think? Do I worry about the discussions parents might need to have with their children after seeing me? Is that something that I should even care about?

     

  • Picturing a morning sail

    This morning we headed off to San Francisco for a morning sail on USA 76 with ACSailingSF. We almost missed the boat, arriving just as they were about to cast off. Fortunately, we got there just in time, and they nicely sent someone up to fetch us at the gate.

    Hopping on the boat, I was immediately happy. After a little bone pain yesterday, I wasn’t sure I’d have the energy to get out sailing – but rather than it tiring me, sailing refreshed me. It was nice and windy (at least at first) so we had an excellent, and thrilling up wind leg.

    We brought the new GoPro, which I spent some time playing with. Unfortunately, most of my pictures involve either my fingers or the string tether in the corner of the camera. Since you cannot see what you are taking a picture of, I didn’t quite realize it. So, I’ve chosen a few pictures that turned out pretty well.

    Scott resting after having been one of the grinders raising the main.

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    Under sail!

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    Playing with selfies on the Go Pro.

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    Some video of Scott grinding as we tack on the up wind leg.

    I enjoyed some time right up at the front being reminded regularly with mist that we were on a body of salt water!

    At one point I even took off my hat and buff to feel the wind on my bare skull and of course get a bald head picture 🙂

    DCIM\100GOPRO

    After our sail, we had lunch with some friends on Pier 39. Overall, a great way to spend a Sunday.

  • Reflections on body image

    Walking today, my husband mentioned by blog post about my improved body image. He ask if it was because my focus is now on strength rather than fat or weight. It occurred to me at that point that is was actually my physicians response to my body that was perhaps the biggest factor in my changed body image.

    My family medicine (primary care) doctor mentioned my body only in that I needed to consider my body weight. That I was at a point where I was starting to tip the scale towards obese. I was carrying too much weight. Yet, there was no focus on how strong I was or any other aspect of my physical health. I eat relatively healthy (healthier than most), and I exercise perhaps a little excessively compared to the average person. And yet I never really saw myself as someone who was in good health.

    Then I saw my oncologist. When looking at my health overall, he listed it as “excellent”. I was rather proud of that fact. And going into treatment for cancer, I felt stronger than I’ve ever felt. I felt healthy! Actually that too was an interesting challenge, as I felt strong and healthy, so did not see myself as ‘sick’. The whole cancer thing causes a cognitive dissonance, as I feel like I’m in excellent health.

    Upon reflection I realize just how large of an impact the view of my physicians has had on my overall self perception of my personal body image. Before cancer, I felt that I was overweight. Even though I was in good shape from a cardio perspective, and pretty strong (regular 30km+ bike rides), I still felt ‘fat’. I felt ‘overweight’. I knew that I was 20-30 pounds over my “ideal” weight. But now, (OK, I’ve lost 10 pounds, but still), I’m much happier with my body the way it is. I’m proud of the classification of “excellent health” in my oncologists records.

    I think it is just interesting how much weight I put on the opinions (or perhaps the presentations) from my doctors … and wonder, what family (primary care) physicians might learn from this reflection?

  • My improved body image

    I find it interesting that ever since my diagnosis, I have found that I have an improved body image. Sure I am carrying a few more pounds than I would like, but I am proud of the way my body looks. I rocked the buzz cut! Now with my hair patchy and falling out, I find myself dressing up a lot more to go out. When I visit friends or go to doctors appointments, I wear nicer cloths and dangly earrings. I’m getting a bit obsessed about buying different things to wear on my head that (get this) actually compliment the clothes that I’m wearing. I’ve never been that fashion conscious before!

    But each day, I also read Facebook posts in the amazing Flat and Fabulous group about women who are afraid to walk outside their doors after surgery. They are constantly worried cautious about how they look. They fight every day with negative body images, and struggle because they don’t want ‘yet one more surgery’ to clean things up. Some live in physical pain, while others the pain is mostly emotional. They struggle every day.

    This worries me. I have never been happier with my body. So I’m worried about what it will look like after surgery, but also what the surgery will do to my sense of body image. I want to keep this feeling I have now. I don’t want it to ever go away. I want to always be proud of my body, and happy with my body the way it is.

    Since my diagnosis, and I started this blog, I’ve used the expression “my breasts are now public domain”. I talk freely about them. I have even posted an MRI picture of the cancers in my left breast. If I were back in Ottawa I would have asking all my girlfriends to feel my left breast, so that they too would know exactly what breast cancer ‘felt’ like (as part of my public service announcement). As an educator, I am now in a position to educate people about what it means to have breast cancer. But I have to highlight that I’m an exception to the rule. My self-confidence and my current body image is not the norm. For too many women this is an everyday struggle, and I find that sad. And everyday I hope that surgery doesn’t change my current view of my body image!

  • Moving forward

    I now have a surgery date – December 17th. It isn’t exactly the date I wanted, but it is something that I can work with. With that in place, I can now start to move forward with my life.

    Over the last week I have started to move beyond my diagnosis. My life is becoming less about cancer-Becky and I am looking at a re-emergence as academic-Rebecca. I have talked to my supervisor and put a plan in place that will allow me to move forward with my PhD. I’ve talked to the very supportive folks at the Department of Family Medicine who are also onboard to help me move forward. I am thankful for all the support I’m getting.

    But the whole idea is still rather difficult. I’ve had to turn down a couple of conference presentations – the most recent being Dev Learn – which is disappointing, but there is no way I could travel to Vegas during chemo and present at a conference. It would be too much. I’ve decided that I’ll try a near-by conference first – one in Berkeley where I’ve had a poster accepted. I can get to Berkeley in 2 hours via public transit. It will be my first academic conference post-surgery (end of February), and I most likely won’t have hair. I have nice outfits that I can wear that will work with a flat chest, if I choose not to wear foobs, but I haven’t thought yet about what I shall do about my head. The whole idea of conferencing seems a little overwhelming right now – and yet I know it is something that I need to do as part of my re-emergence.

    In this re-emergence, I am already thinking about my new identity – and how much I might want my identities to overlap. I’m considering a proposal for the Canadian Conference on Medical Education (CCME) relating to this blog, my experience as a cancer patient, but also my role as a non-physician medical educator. I’m not sure what that presentation would look like yet – I need to do some more consultations with friends and colleagues in the medical education field, and with any luck find one or more people interested in collaborating on something. I feel like there is something important to be learned in this process, I just don’t know what it is yet. I’d like to talk about the power of social media as a cancer patient – perhaps the role of social media in cancer patient education – and what medical students, residents, and physicians can learn from the new ‘connected’ patient experience.

    My forward moving may get delayed now and then – and I certainly am not moving at the same pace as I was before diagnosis or chemo – I am glad, however, to be making some progress.

  • Negotiating identities in multiple worlds

    I find myself living between two worlds – or perhaps more – negotiating my different identities.

    Anyone who gets breast cancer under 45 is considered to be ‘young’, so I’m re-negotating what it means to be a young cancer patient. In church, we had groups for young adults age 18-35 and I remember the very awkward transition that happened as I could not relate to the younger group. We ended up starting our group of 30-40 somethings that allow us discuss spiritual and life issues in an environment we could relate (eg. kids, career orientated jobs, mortgages, marriages).

    With the cancer groups, I find that professional I relate to the 55 ish old women. These are women who have established professional careers (consults, or other professionals). It is a peer group that I can relate to – however, I don’t have the same kinds of cancers they do. I find that when they hear of my cancer it scares them – because is it not what my first surgeon called “old lady cancer’.  They have slow growing cancers with life expectancy outcomes in range of 95-98%. They are the survivors.

    The young cancer group has so much more to detail with, in many ways. They usually have more aggressive cancers. They are often raising young children (or early teens). They have family obligations and concerns. Some have great support but others are just amazingly powerful women that just power through cancer treatment without asking for help from their families. From this perspective. I’m not that strong, or perhaps a little wiser. My bike trip (http://goingeast.ca) has shown me that people want to help – and sometimes it is better for the people in your lives if you can provide them with concrete ways to help.

    I do find that my empathy levels for others has increased. I worry about how my fiends and family are adjusting. So, although I may blog a lot about myself and how I”m feeling at a particular time, I do it with a worry about how others will feel when they read it. What will help others understand.

    I often find myself forgetting to send out thank-you to those who have sent cards and well wishes. I want to say that I really appreciate everything that has come my way – I just cannot keep track of it all, nor track down everyone to say a personal thank-you. But I do want to say it hear. I greatly appreciate all the support and kinda words I am getting. I hope my short thank-you is enough for you to understand that you too are in my thoughts and heart.

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