Tuesday, April 26, 2016

A Rudderless Ship

In a recent #gyncsm chat we asked the question,
What needs and concerns did you have when you were first diagnosed and treated? How were they addressed? What was lacking?

My response was
Most lacking was when treatment ended the first time. I was a rudderless ship. Looked for other women dx for support

I was great at staying on track with treatments and blood work and CT scans. Don't get me wrong it wasn't easy but I was focused on what I had to do.

Then I finished chemotherapy number nine and saw my gyn onc. She did her exam , checked by blood results and CT scan and said "See you in a month" What? That's it. After spending multiple 8 hours days each month for seven months at my cancer center, I was set loose. What do I do? Where do I go now? Sure I was happy to be disease free but I was worried about a recurrence. I didn't know how to live having had cancer.  My ship lost its' rudder.

I still needed a two hour nap every afternoon. My hair was not even at the peach fuzz state. I was pale and lacked eyebrows and eye lashes. I couldn't concentrate and reread many chapters in every book I attempted to read. There was only 2 month left in the academic year but I was still too exhausted to go back to teaching and work an 8 hour day. That would have to wait until the fall.

I started to research what others had experienced. I was thankful to find the book  Dancing In Limbo:Making Sense of Life After Cancer. I felt much better after finding out that I wasn't the only one who felt lost after treatment. I also found a local chapter of the National Ovarian Cancer Coalition (NOCC) and at their monthly meeting became friends with other women who were out of treatment. I found the classes and workshops and networking groups at the Cancer Support Community of Central NJ helped me move into my survivorship stage more smoothly.

I so wish someone had handing me an information  sheet about the physical changes I would experience or continue to experience after chemotherapy. But more importantly I wish someone would develop a survivorship plan with advice on dealing with the emotional and mental issues too.

What was the hardest thing you had to deal with when you finished treatment? 

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