BC Becky

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

Category: Three years and counting

  • Precision social media support – an #epatient example

    In early January, I joined Christopher at Just Talking for a podcast. One of the topics that came up during the podcast was the role of social media (and in my case Facebook groups) as patient support when going through illness.

    I spoke of my experience with Facebook groups relating to my choices are breast cancer surgery. Early in my treatment I was certain that I was not going to opt for reconstruction. I joined this awesome Facebook group called Flat and Fabulous. The women in it were a constant source of support, not just around the decision to go without reconstruction, but also on other aspects of learning to live with breast cancer and managing side effects of chemotherapy. I know that at any time of day I could post a message and I’d receive encouraging and informative responses.

    When I decided that I would opt for reconstruction after all, I had to leave the flat and fabulous group. Their guidelines were clear – they were there to support those who chose not to reconstruct. They were not making any judgement or value statements, just that they have a clear niche and want to keep it that way. And so, I left the group, and found another group – this time, the group I sought out was one that supported the specific type of reconstruction surgery I was having. This too proved to be very valuable to me, as I had 24/7 access to women who knew what I was going through. When I had a weird symptom I could ask, is this normal? Is this something I should call my doctor about immediately? or is it something that can wait until the next appointment? The group helped me prepare for my surgery and helped me be better prepared for what I would be experiencing in the aftermath of the surgery – all the little (and not so little) things the doctors forget to tell you.

    What is interesting about this is that I was about to find Facebook groups that aligned with where I was in treatment, and that as my treatment changed, I was able to find groups that aligned with those changes.

    In the pod cast, Christopher mentioned a connection to the concept behind precision medicine. The idea being that rather than giving one treatment for everyone, that we use some characteristic (in the case of precision medicine it is molecular makeup of tumors) to determine treatment. So, it is isn’t a one-size-fits-all, but rather a more personalized approach. In some ways, social media can provide this. In my case, it was with Facebook groups – there are so many different Facebook groups around the different areas and treatments for breast cancer that I was able to move from one group to the next when I needed to. I could find one or more groups that supported me in the stage / phase that I was in. When the group no longer aligned with my needs (or treatment choices), I was able to find another group that worked better for me.

    It makes me wonder if others who use social media for health support, if they do the same thing? Is the movement from one group to the next common?

  • Self-awareness as health literacy

    I was walking with my friend Lori today and among the many things we chatted about, one of them was health literacy – the topic for my PhD dissertation. I had talked a bit about how health literacy isn’t just a skill but rather it is a practice. I read an article by Uta Papen that talked about health literacy as social practice.

    The article mentions a different frame of reference for defining health literacy – specifically:

    The study was grounded in a view of health literacy as social practice. Accordingly, we talked about health literacy ‘practices’ rather than health literacy ‘skills’. Setting aside the notion of skills, we were able to explore what people do with reading and writing rather than to ‘assess’ how good (or bad) they are at what they are doing. This is not to say, however, that we were not interested in people’s abilities. But we did not define these as narrow skills. Rather we conceptualised them as context-bound and changing competencies, some of which, as I will show below, were not located in individuals but in groups and social networks. (Papen, 2009, p.21-22).

    One thing that came up in our conversation was the importance of self-awareness and body-awareness as a health literacy. Both Lori and I are very aware of our bodies – sometimes this can be rather uncanny. Lori has felt her cancer growing (she has metastatic breast cancer), and has noticed tumors growing before they show up on scans. She is highly aware of when things are not right. This often reminds me of the multiple intelligences theory – and how one of the intelligences surrounds body awareness, but I don’t completely buy it, as I do think that to at least some extent this awareness can be learned.

    Our discussion turned towards health literacy, and I found myself asking, is this sense of body awareness or self-awareness a health literacy? Is this something that patients (or people in general) should consider developing – a broader awareness of what is happening within their bodies, but also learning how to express those changes in language that others understand?

    And now that gets me thinking about communications issues between patients and doctors (or other healthcare providers). I can recall several times when I have described what I am feeling in a way that has been misinterpretted by healthcare practitioners. Or when I hear them use a term and I think I know what it means, and so I use it to describe what is happening to me, and that description then leads us down a wrong path … so that maybe my awareness was actually a problem.

    Hmmm… I’m not sure anymore.

    Should people be more aware of what is happening in their bodies? Or is perhaps, willful ignorance also a strategy?

    In that very same article, I also wrote myself a note that ‘Passivity could be an intentional expression of self advocacy‘. I’m pretty sure I’ve talked about this idea before. If you are intentionally abdicating decision making, then that can be seen as self-advocacy, as it is in an intentional choice. Abdicating decision making is only a problem when it is not intentional.

    What is amusing is that this blog post has meandered from one thought to another, loosely connected and yet somewhat disconnected. This is exactly how my conversations with Lori go … we walk and we talk … we have some good ideas, and not so good ideas … either way, it is a great way to spend an afternoon.

     

  • Transitions

    Transitions

    I realized that although I was feeling a loss associated with my gym membership, that this was also an opportunity to make a change. Part of that was a reframing of the loss. I started to think about it the same way I felt when my ADA parking permit expired. Back then, I thought about how I should be celebrating that I no longer needed it, rather than dwelling on the losses associated with not having it.

    The gym membership is the same thing. The new program that is replacing the one I was on, only allows people who are two years out of treatment. They do not consider the ups and downs of long term hormone therapy as treatment. This means that I no longer qualify. By their measure I’m almost 3 years out of treatment (March 17 is 3 years since my last surgery). I have also had the gym membership for 2 years – so I have already benefited from the program for two years. Perhaps it is time that I moved on. I looked at a regular membership at that gym, but at $200/mo it just didn’t make sense. That is a LOT of money, given that I primarily use the pool.

    And so, I’m now in the hunt for a new gym membership. I’m exploring options that might work better for me. I’m looking into a yoga studio, which might address part of my gym needs. I also would like to find a decent salt water pool for regular swimming. I checked out one local gym and was under-impressed.

    I’m finding myself look at the things I did before cancer. Swimming, yoga, biking … I need to get back into biking. Since cancer, I’ve added hiking to the mix. I’m actually at a point where I’m doing too many things, that I have trouble deciding which activity I should do on a given day.

    I have reframed my loss into a transition that I shall celebrate. I’m taking one more step towards post-cancer normalcy … not have the membership means I’m not tied to that gym. It means I have freedom to try out other things … once my toe is in good enough shape for yoga (not allowed yet – doctors orders that I can only do exercise that involves the support of my hiking shoes) I’ll join a couple of friends for some regular yoga practice. If the weather holds, I’ll do more biking. And with each day, I add a little more distance to my hiking … hoping to be back on the trails soon.

     

  • Balancing optimism and learned helplessness

    I find myself wondering – do I have reasonable expectations of what medical science and healthcare can do? At what point am I being overly optimistic? Or am I learning helplessness?

    I have many chronic conditions, several that have been part of my life for a long time, others that were triggered by chemotherapy and cancer treatment. I find myself optimistic that some of my healthcare professionals will finally be able to get to the bottom of what is happening, and then we can find a solution. I am optimistic and hopeful that medical science and my healthcare team can make things better. But then I ask, do I have unrealistic expectations? Am I, yet again, setting myself up for disappointment. Perhaps if my expectations were lower, then I would be happier with the outcome – but then I ask myself, is that just me learning helplessness – is it me giving up when I should be fighting or working towards something better.

    Living with chronic conditions is a constant battle between thinking that something can be fixed or improved, and learning to live with the issue – and figuring out which is the best path to take …

    And so, I find myself wondering, am I being overly optimistic about what is helpful? Am I slipping down that slope of learned helplessness such that I should keep pushing, or should I step back and accept the current reality as one that cannot be fixed and learn to live with it?

  • Moving forward

    Lately I’ve been struggling with the idea of working full time. I find that I just don’t have the energy to do it. I do, however, miss the person I used to be. I miss the ability to sit at my computer for hours on end working on a project – but then I wonder, is the problem just that I have not committed myself to anything? That I have allowed myself the flexibility and as a result of that, I have not taken on anything that will force me to focus?

    I find myself challenged even with this blog post. I need to write something. I need to commit to something. And yet, I am not feeling particularly clear in what I want to say.

    With that, I looked at my calendar and booked off vacation. My spring is jam packed with wellness retreats and conferences – oh ya, and the recreation of Should I blog – with the help of an instructional design student. My summer is now also jam packed with teaching two courses.

    And so, I find myself remembering to live. It has been more than three years since I finished cancer treatment. I still look at my days, asking the question, am I doing what I want to be doing with my life?

    I’m also really missing hiking. The weather has been amazing the last few days. The hills to the east are green. I find myself yearning to walk in those hills – to explore new trails. Hopefully next week I’ll get the all clear from the podiatrist to start hiking again – easy / flat trails at first … and then eventually longer hikes. But for now, I shall hobble around the block – gradually, each day walking a little further – building on what I did the day before.

    I guess that is life, one step at a time.

  • Lost without a gym membership

    I just found out that I’m about to lose my gym membership. I currently receive it through a special program for cancer survivors – but the program is being phased out, and with it my gym membership. The new program is limited to those who are within a two year window of treatment which explicitly excludes hormone therapy – which is truly annoying.

    I get it, sort of. Going to the gym regularly in those first two years was critical. The program that got me weight training right after chemo/surgery made a huge difference in my wellbeing.

    But now, I’m feeling a little lost. I’m surprised at the impact. The one part of the gym that I loved was access to the pools – specifically, access to really nice salt water heated outdoor lap pools. Swimming is the activity that I attribute to my range of motion (and the fact that I have full range of motion post surgery), as well as the recovery from lymphedema. We have a pool in our community, but it only heated in the summer. It also isn’t a lap pool. It is OK for a short swim, but isn’t really good for a workout.

    So now, I’m looking for a new gym. The one thing I dislike about the gym membership I had was that it is a 20 minute drive from home. It is a bit far, that I didn’t use it when I wanted to go for a quick swim. If I can get a membership at a decent pool someplace closer to home, then I would likely use it more often. It did, however, highlight how I really appreciate a decent pool, looker room, and showers. I also really like the security of a quality gym – in that I didn’t feel like I needed to worry about my locker being broken into while I was working out (a problem at some of the lower cost gyms).

    The loss of the membership may prompt me to do more outdoor activities, like trying to spend more time on the bike, and certainly more time hiking. Maybe this is an opportunity, a disruption, that I needed.

  • Update on my foot and three years …

    Update on my foot and three years …

    The good news is that my foot is healing well. The first few day was OK, the second and third days were quite painful. I didn’t have strong enough pain meds or a good enough strategy for dealing with the pain. Fortunately, I knew enough not to suffer too long, and called the weekend emergency number to talk to the on call doctor (who I woke up at 6:30 on Sunday morning) – which really helped. It meant that Sunday didn’t suck nearly as bad as Saturday evening did.

    By Monday the pain reduced, and now I’m almost totally off of pain meds – I’m taking Tylenol about once a day. One of the challenges with less pain is the temptation to put weight on my foot. The doc wants me to not put any weight on for another week – so that the implant has a chance to set – in order to reduce the risk of the implant shifting. Makes sense, but it is a lot harder than I expected it to be.

    One the challenges I’m having is the knee scooter is causing me to use my leg muscles differently. My muscles are cramping and sore, just from trying to do a few basic things like making myself lunch or dinner! It got to the point where I was feeling I needed strong pain meds for the scooter related muscle pains rather than the toe pain (ugg). So, I’ve had to rely on friends and hubby to ensure that I have food. I am glad for the visits from friends – it has kept me from feeling isolated while I’m housebound.

    I’ve spent most of the last week on the couch. I hope to spend most of today either in front of my computer or on the couch – perhaps alternating between the two. Writing and reading – working on my dissertation. Since the sun is out today, I may try to spend a little time reading on the front porch – it isn’t really in the sun until late in the day, but just sitting outside and breathing in the fresh air will improve my mood.

    It occurred to me that I also need to create a new category for my blog. This time last year I created a category “two years and counting” .. now I’m at “three years and counting” … I’m not sure when I’ll stop counting, but for now, I am recognizing that I’m three years without any known cancer. My outlook on life is slowly shifting. I’m looking at ways to reduce the number of doctors I have (although I’m not completely succeeding at it). I am still dealing with several issues with chronic illness / chronic side effects. But, as my toe surgery demonstrates, I’m moving onto non-cancer related health concerns. I’m hopeful that once I’m healed from this, I’ll be able to walk and hike with less pain. I’m so looking forward to getting back onto the trail.

    Figured I’d end this post with some coastal pictures – taken up at Point Bonita the weekend before surgery.

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