I did enjoy the conference (Thyroid Cancer Survivor's Association) this weekend but it was tiring. And conferences make my back hurt - now that's not news I know but I thought I would slide it in there anyway. Everything makes my back hurt these days. This makes me cranky, whiny, crabby, and my inner evil bitch may come out with the least provocation. Anyway, the conference was great and I am glad I attended. I learned:
- Thyroid cancer people (again I won't use the S word even if its in the name of the association) don't like being told that their cancer is the good kind any more than breast cancer people do. There seems to be a general misconception out there that if you get cancer and its in something they can cut out, or otherwise rid your body of, of you easily, its a good kind of cancer and not as stressful. Let's just say cancer is cancer, people are morons, and they have no cure for cancer or morons. People die from thyroid cancer (see Chief Justice Renquist for example) just as they do from any other kind of cancer. There is no such thing as a good cancer.
- I attended a session on chronic pain management that was taught by an instructor at Harvard Medical School. He did go on and on a bit about opiods and their use for chronic pain but also taught me a bit about dealing with constant pain vs. break through pain (I get both) and how to handle their treatment. He did mention something about how cancer patients with pain issues should be tested for fibromyalgia. After that session I asked him directly about this and he said that yes if I have pain, I should be tested. So being the informed patient and not knowing anything about fibromyalgia, I went home and looked it up. It doesn't sound like me so I am going to cross that ailment off my list for now but perhaps will mention it to my doctors in an upcoming visit. After all, he went to medical school and I didn't so maybe he knows more than me.
- I attended a session on coping with a cancer diagnosis. It was led by a panel of people who are employed at a local rehab hospital. One was a nurse who is a director there and just was diagnosed with cancer, one who manages the volunteer program, and one who is a non-denominational chaplain at the hospital. I wasn't as impressed with this as it did go on and on but I did get two messages out of it: 1. Never give up hope. I completely agree with that one and they even recommended a book I will have to go check out. The Anatomy of Hope by Jerome Groopman. 2. They also recommended prayer as a way of coping. But they assumed everyone was religious. I don't really have much to do with religion and you can probably consider me an atheist/agnostic. Prayer isn't going to do it for me. But I have seen many who use prayer and bring more religion into their lives when faced with adversity such as with illness and it works for them. I guess, do what works for you.
- There was a session on working with doctor-patient relations. Apparently, I do the right things by bringing in written down questions and asking them. Well, usually. Sometimes I forget to ask them. I am not as good at writing down the answers but I will have to work on that part. Chemo brain allows me to forget things quite rapidly.
- Another session I attended was on dealing with multiple medical issues at the same time. That was interesting as it was more of a round table discussion where we all participated. One participant was a pharmacist and he was able to add some helpful bits about managing medications and dealing with pharmacies - your pharmacist is a great and often very underutilized resource. I was reminded that while I am privileged with having a million ailments these days, there are other people who are worse off than me. I guess I just whine better and assume that I am the center of the universe.
I attended a couple of other sessions and volunteered a lot - this meant helping people get their badges and information packets and selling the souvenir stuff they use for fund raising. I am now the proud owner of new sets of daily pill boxes (because I need more than one so I stop messing up my pills) and a Thyca tote bag which zips shut - a nice added feature. They raffled off a bunch of things, which I actually won 3 of: a baby gift basket (that I am donating to a charity), some home made soaps, and a book: Chicken Wings for the Beer Drinker's Soul which I gave to my husband. I also met some great people and had a good time. My back thinks I should have attended one day and not three but it will just have to suck it up and get over it.
Today I am meeting a friend for a walk and lunch before going to work and after working from home. We actually started planning a walk and lunch in July but between complicated schedules, we finally are going to get together today, provided the snow has melted (yes it snowed here yesterday). Even if we don't walk, we will have lunch and catch up.
Monday, October 19, 2009
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