BC Becky

Never Thought I'd Want to be a Breast Cancer Survivor

Tag: support

  • 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

  • So I did it, but I need your help

    So, I did it, I signed myself up for the Avon Walk. This is a fundraising event that involves walking 39.3 miles over two days. The first day you walk a marathon, and the second day you walk a half marathon. The walk takes place through the city streets – in my case, it will be through the streets of San Francisco. As this is a fundraising walk, I need your help. In order to participate I need to raise at least $1800. So, I’m asking for your help. My fundraising page is:  http://info.avonfoundation.org/goto/rjhogue. I may seem like a cliche statement, but every little bit helps.

    I really debated signing up for the walk. I don’t generally like these large fundraiser event type things – but I was motivated by several things. First, one of the ladies in one of my support groups spoke very highly of it. She said she found a lot of encouragement in the crowds that gathered to cheer them on. It as an emotional but very uplifting experience, and that takes on a whole new meaning when you are walking as a warrior/survivor.

    I looked into where the money went. I’m lucky to be located near Stanford, a center for excellence in breast cancer treatment. It is where a lot of the clinical trials happen. It is one of the few universities in the US that set the standards of treatment for the rest of the country. But I’ve also been lucky to be near Bay Area Women’s Cancer Connections (BCC), an organization that has provided me with a lot of support. There are lots of free resources that have been made available to me. I’m also very aware of a lot of women who are cancer poor. Women who have to make treatment decision based upon their finances. And I don’t even see the women who don’t get screening done or who have very limited access to healthcare. It is a real problem here – and so events like the Avon Walk providing funding for research, they also provide resources for women who could not otherwise afford them.

    The final reason I decided to do it (other than the cool opportunity to see San Francisco) was the timing of the walk itself. I’ve started to look beyond treatment – I’m making the move to look ahead in my life. The walk will come at a time when I should have completed the major treatment phases of breast cancer (chemo and surgery). There is some hope that after surgery I get declared “NED” (no evidence of disease). The treatment doesn’t stop there, as I’ll be on hormone blocking medications for 10-years – but I should be disease free. As such, the walk will mark a transition – from warrior to survivor – and that is something significant and should be celebrated.

    As I write this, it is day three of my third chemo cycle. I had a great visit with a friend today which did a good job of distracting me from how awful I feel on day 3. Last cycle I also felt awful on day 4, so I have a reiki appointment which will hopefully fill me with healing energy and get me through this cycle. I’m truly hoping that the cumulative effect doesn’t mean I feel awful on day 5! Only one more cycle of AC to go (yay) – and my oncologist promises that T will be better! Going out today gave me an excuse to dress up and try out the stylin’ new hat and earrings my mom sent! I am amused at how much I like to dress up when I go out now – that is so not like the old me.

    We are going camping on Saturday night. We have not been camping yet this summer – which is so unlike us. Having a temporary disability permit has been a life saver for me. It has meant that I can run errands even when my energy is low, but it also means we can go camping this weekend. The California State parks set aside certain sites that can only be used by someone with a placard. So even if all the other sites are full, no one else is permitted to use them. This meant that when I was looking for a site on Monday, there was one still available for Saturday. It is a real savior to be able to go camping at the last minute, as there was no way we could have planned in advance how I would be feeling. Honestly, I’m not 100% certain I’ll actually be up for it – but I figure, if nothing else I can spend an afternoon reading a book in my camp chair surrounded by ancient trees – sounds pretty peaceful to me!

     

  • Joining the cancer blogosphere

    I have been blogging for a few weeks now, but I have been very hesitant to read other people’s cancer blogs. I’ve been hesitant to reach out to too many others who are going through similar experiences to mine. In part, this is a form a denial, in part it is a form of fear.

    I have strong online relationships. I am part of several online communities where I find strength and much needed support. But, to join a cancer community means to admit that I have cancer – but there is more to it than that – it is the fear of joining a community and then losing people in that community. I’m OK with admitting I have cancer, but I’m not OK with admitting that it is something that might one day kill me. I’m afraid that if I develop solid friendships with others who have cancer, that I’ll lose them. I don’t want to have to deal with the death of a good friend – and so, I hesitate. I hesitate to reach out too much to others who are also going through this experience – not because I don’t want to meet these people or get to know them – just that I don’t want to get to know them and then lose them.

    But I also realize that I need them. I need to read about others experiences. I need to learn from them. I also need to share my experiences, so that others can learn from me. It is this need that is driving me to participate in the online communities (and face-to-face support groups as well), but I must admit, that I do it with hesitation and a bit of fear. Afraid to get too close to anyone who I might lose.

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