BC Becky

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

Tag: research

  • I almost didn’t go …

    I almost didn’t go …

    My proposal for a paper presentation at the Health Humanities Consortium Conference in Houston in March was accepted. When I was first accepted I was really excited about it. Then the plane tickets cost a little more than I’d like. I found myself doubting – do I really want to go? I found myself justifying all the reasons why I might not go.

    It was the celiac talking. It was me trying to avoid going out because the food might make me sick. I was deciding not to go because of fear – not for any really good reason.

    Yes, I’m nervous about the travel – air travel makes me anxious. I used to love it, now I worry that I’ll starve, and end up packing so much food that all I do is eat my way through the flight.

    I worry that I’ll be hungry during the conference. I even asked the conference organizer about food – which they haven’t planned yet. I got an awesome reply. They said they’d try – I cannot really ask for more.

    Once I realized the reason my waffling was fear talking, I decided to push through. I booked my flights, hotel, and registered for the conference. I’m committed now.

    I haven’t been sick since July. That is six months without accidentally consuming gluten. My blood anti-body levels are back to normal. From a celiac perspective, I am healthy.

    I have also tried to get past my fears on a local level. The other day I went out for fish tacos at my favourite local taco place. I only had one thing – fish tacos. I figured that if I tried anything else and got sick I wouldn’t know what made me sick. Next time I’ll try the carnitas (pulled pork) tacos. If I get sick then I know I need to stick to fish. I find that I need to take this one step at a time.

    I’ve also learned that if I’m going to branch out and try something – I might as well try a lot of it and really enjoy it. You see – if something is going to make me sick it doesn’t matter how much I eat. The level of sickness I experience is no different between a quarter teaspoon of flour and two cups of flour, so if something is going to make me sick I might as well get the most of it and really enjoy it – as it will likely be the last time I try it.

    Of course, now that I’ve decided to go the conference, I need to figure out my presentation. I’m working on my research now. I won’t get a huge amount of time to talk – so my presentation will need to be short and focused. I realize now that my past presentations have been a bit scattered – they have included snippets that were not relevant to the message – they may have been relevant to me personally, but they were not relevant to the overall storyline or the message I was trying to send. So now, I’m trying to figure out – what will be the theme for my short presentation?

    Feature image CC0 via Pexels.

  • 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

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