My six months in Boston, from June 1997, were lonely and weird. I took refuge in watching M.A.S.H. and Star Trek on tv at night, as they felt more real than the world outside my room. It felt most real when Stephe, Catherine and Viv came over from work for the epilepsy conference, near the end of my stay (I have a photo of us walking in the snow near Copley Square, just up from yesterday's bomb blasts). I made some dear friends in Boston (I miss you!), and met lots of other wonderful people. It is awful to think of the shock and trauma the community must be going through. I'm trying to stay detached from it, and am managing a sense of disbelief. I don't want to allow myself to feel as upset as I was by 9/11, the Japanese tsunami, and the Victorian bush fires of 2009 (literally too close to home). Prayers and love for the people affected by the bombings, and all traumatic events everywhere.
One more task completed by 1015, Ben came to collect me for my 1030 session. We checked in, and went to the main waiting area and waited, and waited, Finally called in just after 11 by Monday's nurse. Seated away from the windows with their view of the garden, I discovered that she should have put a cap on the line from my needle. I asked the new nurse what he could do about it - he said he could clean it thoroughly, or put in a new needle. I chose the latter - don't want any chance of sepsis. He said it was a wise choice, as the infusaport empties into a central vein. If an infective agent gets in that way, it's like a "septic shower," I.e., the bacteria gets distributed all over the body. Not good. So I received a brand new needle in one sharp jab (not as stinging as the local anaesthetic). Walked out at 230, feeling ok after a little nap and a few trips to the loo (drinking two litres of water tends to have that effect). The nurse capped off the line with a positive pressure cap, so I am not allowed to seal the line with the little yellow clamp. Amazing technologies, so grateful for out universal health system, it costs people in America thousands to access this treatment, even with private insurance.. The main cost to us has been over $300 on medications.
When I returned home, I took all my anti nausea meds. I thought I might try a prophylactic approach, rather than taking them when symptoms appeared. It seemed to work - I haven't felt sick, just deeply tired. I had to crawl into bed at 730, and couldn't muster the energy to converse with David, who was a little offended by my "can't talk, need sleep" comments. I woke up at 1115, so I've had my Clindamycin and anti nausea meds, and now I'll be back to sleep. Need my G-CSF shot at 230 tomorrow, then I hope to cruise through this last three weeks of FEC.
Next chemo: Taxotere (doxetaxal). Main side effects - pain, oedema. May lose my eyelashes and eyebrows. Will need to wear ice gloves during chemo to reduce risk of peripheral neuropathy. I asked if they have ice socks as well - two friends and a cousin have peripheral neuropathy after chemo, and it's the problems with balance that bother them most...
Nearly half-way there...
