scifiknitter

I am now blogging for pay on two websites. That’s something I never expected I might do. Blogging has been a hobby and a means for learning about myself. Sometimes I find out what I really think only after I start writing it down. If you write for pay, you have to reckon with the fact that you are giving up your rights to the words you put together. Those words have been sold and title to them has passed from you to a new owner, just like selling a used car. I tried to negotiate a deal where I could keep the rights, but that simply is not the way the world works in most cases. After thinking about it, I decided that the potential good I could do meant more to me than retaining ownership rights. The extra money could be used to travel to conferences, which are hard to afford on a fixed income. I also realized that I could be selective about what I chose to sell. I am writing different kinds of pieces for the two sites. One wants only survivorship-type topics from me: how to dea...

Engrossing, fast-paced, fascinating, accepting: these are how I describe the bi-weekly #LCSM chats on Twitter. The acronym translates to Lung Cancer Social Media, and a group of advocates, patients, and medical professionals have committed themselves to hosting these hour-long discussions of important lung cancer topics. The official site: lcsmchat.com . The site has the next topic to be discussed and a list of questions that will be covered by attendees. There are also links to much other information of value: transcripts of past chats, lists of blogs, and many other resources. Newcomers to Twitter and to the chats are often confused about how to use Twitter and participate in #LCSM. I wrote a beginner’s guide on lungcancer.net to help more people take advantage of this great resource. Using Twitter for Connection and Lung Cancer Information: A Primer “ For one hour, patients, advocates, oncologists, surgeons, and pathologists discuss a selected topic. The group is warm ...

A recent post on a patient support site about the impact of cancer and its treatments on intimacy got a response from Karen Loss, an active lung cancer patient advocate. She said she appreciated the fact that I included a paragraph on how these issues may affect single people because this topic is only addressed within the context of partnered people. I asked her if i could interview her about how she has built a support network as a single person, and she said yes. Karen and I covered several questions, and she wrote great answers. We posted her interview in two parts: Building a Support Network When Your Are a Single Person with Lung Cancer: An Interview with Karen Loss “Literally. from the day I was diagnosed, I made the conscious decision to share my journey with my entire list of friends and family… I live alone, so I knew it would be up to me to create any support system I might want or need.” Building a Support Network When Your Are a Single Person with Lung C...

I have a second blogging gig these days. I'm now writing for lungcancer.net, a new website that is building a community resource. The organizers have reached out to several notable lung cancer patient advocates, and I am proud to also have been asked to write for their site. In April 2017, the American Lung Association sent me to Washington DC to represent New York State for their annual Advocacy Day project. Lung cancer patients, survivors, and caregivers from all 50 states gathered to go to Capital Hill and lobby our Senators and Representatives. We all asked for the same two things: increased funding for the National Institutes of Health, and quality and affordable healthcare for all Americans. We also had a heck of a good time. Here is a link to the post I wrote about my experience for lungcancer.net: Lung Cancer Advocates on Capital Hill: A Report on the American Lung Association's Advocacy Day "What is it like to lobby Congress? You want to make ...

 I dig into big issues at the  Free to Breathe  site from time to time that are the type you talk about one-on-one with a close friend rather than something you might talk about in casual conversation. (Although maybe anything related to cancer isn't a fit topic for casual conversation...) These are three recent posts of which I am quite proud. Some Social Security Disability Tips for Patients with Lung Cancer " If you are diagnosed with lung cancer and you are still working, one of your first questions will be “Are my working days over?” Everyone with advanced disease must face this, and even people with early stage disease can find themselves contending with permanent debilitating side effects from treatment." Scanxiety is Rea l! 8 Ideas for Coping with the Stress of Scan Time " A study published last year confirms what all of us already know: scanxiety is real for lung cancer patients, and it negatively affects our quality of life. You know it and I...

I continue to blog at the Free to Breathe patient support site, and help to build a supportive community for lung cancer patients, survivors, and caregivers. Here are four recent posts about issues of survivorship and support: Anniversaries, Cancerversaries, and Milestones of Treatment and Survivorship: " I opened my 13th bottle of Tagrisso last weekend, marking a full year of treatment with this very new T790M and EGFR inhibitor. It’s been a great year, full of love and adventures. I feel like celebrating, even though celebrating a milestone with a lung cancer treatment may not be everyone’s idea of a good time." Anniversaries, Cancerversaries, and Milestones of Lung Cancer Treatment and Survivorship Sharing Our Personal News About Lung Cancer " If you are a lung cancer patient or survivor who is getting periodic scans, you are guaranteed to have news from time to time. How do you share the news? Who do you share it with? What about bad news versus good ne...