Saturday, July 24, 2010

Note from the Cheeky Librarian

If you are an ACC patient (or family member/caregiver) going through your initial treatment period, please remember that each of our stories and disease progression are different, since this is a very rare disease. Some of us go decades without additional cancer showing up, after the initial treatment is completed. Others have mets show up quickly, and have to go into accelerated treatment protocols just to see if the cancer tide can be turned back to healing. If we all got in a room together, we would each have a different story to tell, I can bet you. We still have each other-we just can't use each other's stories to judge what we will face ourselves in the days/weeks/months ahead. But we can sure lean on one another. Stay close to your professional treatment team - they will be your generals in this fight. Contact your local medical or public library for additional research information that you can discuss with your team - I have links on the right side of the blog to help you find libraries. Gather strength and support from your family caregivers. And let the rest of us ACC fighters know how we can help support - whether it is helping with fundraising, getting the word out, or just emailing you with the latest funny animal picture from icanhascheezburger.com to give you a laugh. None of us asked for this particular path in life - my personal request was to have enough money to put in an in-ground pool-but we are walking it, and we are walking it with others that know a bit of what we face. Aching heads - many of us have those (sometimes feels like there are two of them on my shoulders); ringing or plugged or silent ears-yep, due to radiation or fluid buildup after surgery; facial muscles that no longer obey commands; fears in the middle of the night that that pain in your back is a met; worry about partners/children facing another round of illness in the household; carving out life while wearing the cancer badge... Most all of us have similar feelings sometime, so please know you are not alone unless you want to be. The ACC folks I have met are a very warm and respectful bunch. If you get the chance, attend the Mokene, IL Attack ACC fundraiser on August 7-you will see what I mean. If you can't attend but want to meet others online that face similar things that you find yourself facing, check out the forums I have linked on the right side of this blog. You can always drop me a comment, too - I am fairly good at answering. Please remember this advice I got from a wise nurse: despite having our lives changed by cancer, WE ARE MORE THAN THE CANCER. Enough said.

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