Last week I had the privilege to present at an online session of the Community Cares and ECHO Survivorship Program.Joining me on the panel were two amazing advocates, a prostate cancer survivor, Ralph Stowe and a breast cancer survivor, Yakima Deloach. The session began with a presentation by Dr S Manne on fear of recurrence.
Here is my response to a question we were asked.
What do you wish you knew then that you know now about your cancer experience?
This is a great question. For me I wish I would have had a better idea of what to expect after treatment was over. The nurses and my gyn oncs prepared me pretty well for what to expect after surgery and during chemotherapy treatment. But I felt like a rudderless ship after treatment ended.
· They told me I would lose my hair in 14 days. I did. But losing your eye lashes and eyebrows and the hairs in nose took a bit longer. No one told me just how long till hair other than what I call "peach fuzz" would grow in or when it would stop being so curly and go back to being straight like before treatment.
· I had neuropathy in my toes. At times, I felt like someone was stabbing me in my toes. I learned to wear warm boots in the winter and shoes with rounded toe boxes. The neuropathy has stayed with me.
· I was told I would be fatigued from the chemo but no one told me how long I would feel fatigued after finishing treatment. I went back to work 6 months after treatment and every day I got home I needed to take a nap.
· The hardest part though was that I found it hard to remember the names of things. I needed to describe an object such as icicles by describing it - "water that is frozen and hangs off of gutters". Or "white stuff you use to make a cake but not sweet" for flour. I would write a blog post and leave blanks then come back later to fill in the words. Multitasking made remembering words and my chemo brain worse.
I became impatient with myself that I wasn’t bouncing back quicker which leads to a second piece of advice I would give myself - be honest with myself and others. I needed to be honest about what I was feeling, emotionally and physically to get the help I needed. I needed to be honest about being anxious or sad or fearful or vulnerable or tired or in pain or even happy to be here.
