Researching my illnesses

At one point in time, I stopped researching my illness. I didn’t start researching about breast cancer. In the early days, I couldn’t research. I couldn’t mentally process the papers, but I also wasn’t willing to filter through it all. And I certainly didn’t want to hear all the bad stuff.

Then at some point I started with reaching to research to help me analyze treatment choices. I started filtering through the literature to help answer questions I had.

These last few weeks I’ve been hit by too many new things, that I just haven’t been able to keep up. I haven’t had the time to even begin processing the literature – but I need to start figuring at least some of it out. I need to get a better sense of what it means to have lymphedema, celiac disease, and a little bit of hypertension too. Ugg. Never mind the bit about having undergone treatment for breast cancer, and still facing hormone therapy to help prevent the breast cancer from returning.

That being said, I’m in a little bit of a moment of quiet reflection. I’m getting stronger every day, and I’m reminding myself of that. I’m getting to the point where I can start thinking about doing things again. I’m working more again. I’m preparing to go back to my PhD studies in January. I’m even pushing myself to think about bucket list trips that our in the future …

Today I attended the Bay Area Cancer Connections annual conference. I attended as an exhibitor, on behalf of another support group that I attend – Bay Area Young Survivors (BAYS) – this is the group that I wrote the book chapter for. I was not so successful at selling books, but I was success at telling a bunch of people about the group – which really, was my primary purpose for being there. I even made a couple of new connections.

I reflect back on last year’s conference, and how I was in such a different place last year. The conference was a little earlier in the year, such that I was still on chemo. I learned a lot at the conference, but there was also a lot to process. I remember leaving feeling heavy with thoughts. This year I thought the presentations were better. They were more informative, but also with a mind to things that everyone cared about – rather than things that only applied to a subset of the audience. I think they did a better job of designing the conference content.

I also chose to leave early this year. It was nice outside, and I wanted to spend some time while it was still daylight enjoying the outside. I also didn’t feel the need to hang around. The last scheduled session had a presentation on lymphedema that I think might have been interesting. The problem is, that there is so much mis-information out there. So little is known, and so much is shrouded in myths about what to do, that it is difficult to separate out the good information from the bad. The doctor I see is one of the world specialists in lymphedema. I trust what he has to say. I do, however, need to do some more of my own research in the area – just so that I know and understand my own illness better. But until I get around to it, I am taking my own advice – I’m deciding who I trust (in this case, my lymphedema doctor) and trusting that he is guiding me appropriately. I’m lucky to have access to such a specialist, and to be able to delegate the treatment of my illness to someone who is an expert at it. However, I’m also reminded that I am still the expert at my body … so I cannot delegate too much.

And so, with that, I have some reading to do …

  • Becky

One Comment

  • I find myself questioning different things. You are right, there is a lot of information out there that isn’t accurate. Just recently I came across a scary article about tamoxifen. It affected me so much I spent hours trying to figure out if what I read was true. At some point I have to trust my doctors, but like you, I want to be able to understand and be part of the decision-making process. It gives me some level of control. It is hard to know when to draw the line and let others care for you, especially when they are the experts.

    Good luck with your lymphedema treatments!

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