I hope that everyone had an opportunity to read yesterday’s guest blogs – “Papa” and “Searching for Me”. They were truly exceptional. I added a bunch more blogs to the list, close to 300 now. The Hodgkins and breast cancer communities seem to be particularly prolific. I am trying hard to search out bloggers from other cancers – liver, lung, brain, prostate, gynecological cancers. In a way victims of these cancers have a more difficult task connecting with others about their disease.
In searching through the blog world I found a farewell post entitled “Goodnight”. The author had seemingly conquered his cancer. He was moving on with his life, wanting to leave his cancer experience and his blog behind. But his farewell post very succinctly captures his feeling of debt and gratitude to the folks that followed his struggle online, encouraging him at every step of the way. I plan to republish this post in a new page to be called “A Blogging Primer”. This will be a short lesson, with examples and resources, in the hows and whys of starting your own cancer blog. I hope you will join me in trying to promote this feature to the newly diagnosed
Journal – December 2001
I feel almost paralyzed but I am determined to get up. Today was the day I was to be discharged. But today I had started my Campath treatment later than usual, had a reaction, been given the extra drugs. I asked Tish to help me to sit on the side of the bed. Nathan, my eldest son had arrived from Boston late the night before. I was determined not to spend another night in the hospital. And I was a little angry at the way I was feeling. When the nurse came in, I told her that I wanted to take a walk in the hall. But I wanted a wheelchair to push so that I could sit down and be wheeled back to the room in the event that I was too weak to return on my own.
After waiting forty-five minutes for the wheelchair which never showed up, I told Tish that we were walking on our own. With her help I made the complete walk around the unit. We began packing. I decided that while I was angry about the CamPath administration, I wanted to make it something positive, an opportunity for learning. I told the LPN that I wanted to speak with my RN. My nurse never came. But another woman was in my room offering to help me pack. I had dressed and was putting on my shoes with some effort. She asked me if I was sure that I was strong enough to leave. When I learned that she was one of the unit managers, I asked to speak with her and my nurse. I waited for the LPN to take out my IV and leave the room. I decided to speak now with this manager about the calculation of the CamPath rate. I emphasized my desire for this to be a learning experience, an opportunity to improve practice that we should constantly be seeking to do. In my still lethargic state I tried to outline the incident and my concerns. The manager stated that this nurse had seven years experience but that she would have her call the pharmacy. She later returned to say that the pharmacy believed that the administration was within the acceptable limits.
I was not convinced. I had read the manufacturers protocol recommendations. The sole reason for admission to the hospital was this particular drug’s high potential for serious side effects. To deviate from the recommended settings was to invite problems. And hospital dispensing pharmacists (as opposed to the clinical pharmacists available on day shift) live in a world of their own, never venturing out onto the nursing units, and having little if any experience on how drugs are administered or how IV tubing, primary and secondary lines are assembled.
Tish returned from the parking garage and said that all the nurses were talking about my “complaint” as she passed the nurse’s station. Oh great, I have been labeled a difficult patient! My wheelchair finally arrived. Tish was instructed to fetch the car. I was pushed out in front of the nurses’ station to wait. The nurses were exchanging Christmas presents. I sat in my wheelchair, feeling a sense of unresolved issues, feeling that my nurse had been avoiding me. I could see my nurse in the station. When the nurse who would have taken care of me on the night shift introduced herself, I asked her to fetch my day nurse. When she came over, I thanked her for taking care of me and for responding so quickly to my rigors. She said she hoped that she had done nothing to cause them and repeated that this was the way she has always administered chemotherapy. Other chemotherapy drugs have greater degrees of latitude. She gave me a hug and I wished her a good holiday.
The aide pushed me to the front lobby, then out into the cold, blowing darkness when Tish drove up. Nathan, Aaron and Barbarann were at home. I sat in my chair for a while and tried to converse. Then Tish helped me upstairs and undressed me for bed. My body hurt all over. And I have never, ever in my life felt quite so tired. But I was home and that made all the difference.