Blogging During Terminal Care: Communication, Color Schemes, and Creating a Community

Ilana, my wife, was diagnosed with breast cancer in late 2000 at the age of 39 years. Despite a lumpectomy with axillary node clearance, chemotherapy, and radiotherapy followed by tamoxifen treatment, she developed a vertebral metastasis in 2003. Over the next 3 years, she developed further bony metastases despite treatment with several hormonal modalities and then taxane-based chemotherapy. In early 2007, ocular metastases requiring radiotherapy were detected, and liver metastases were found soon after. Over the next 3 months, her disease progressed, her functional status deteriorated, and further active treatment was considered to be inappropriate. She fervently wished to remain at home, and this was made possible with the help of supportive doctors and an excellent community palliative care nursing team. She died at home in June 2007. Ilana had a wide circle of caring friends and a devoted family who wished to support her by all possible means. When first diagnosed with breast cancer, she did not wish to participate in support groups or talk about her diagnosis. When the cancer recurred, her attitude began to change, and she became a public advocate for women with advanced disease. Nevertheless, she often could not respond to the numerous phone calls and messages she received whenever a recurrence was diagnosed, and we found it difficult to cope with this wholly understandable requirement for information. I would despair of arriving home to an answering machine blatantly announcing eight new messages, as well as each of our cell phones declaring multiple missed calls and messages. Everyone wanted and needed to know what was happening and everyone wanted us to know that they cared, but where was the time, and where was the emotional energy? And if I did answer all of these calls, how would I find time to tend to Ilana’s needs, my needs, and those of our two daughters? Over the years, we would ask a couple of friends to create a chain call to other friends or send group e-mails to keep people informed. However, these approaches have several limitations. First, some friends missed out on the chain call because they were not part of the network. Additionally, many felt the need to call us immediately, thereby negating the intention to give us time and space. Finally, e-mail can be an impersonal medium, and it is difficult to convey sensitive, emotionally charged information without seeming blunt. In the last few weeks before Ilana died, her ability to socialize became increasingly limited as her physical state declined, which intensified the concern of friends and family but simultaneously curtailed their ability to communicate with her. Approximately a week before Ilana died, a close friend, after a discussion with her daughters, suggested using the Internet to disseminate information about Ilana. After speaking to my own daughters, I decided to set up a blog.