I remember completing treatment.  I was diagnosed in 2001, and if I remember right, my last IV chemotherapy treatment was January 22, 2002.   I always went to chemo alone, I drove myself, so decided to take myself out to lunch to celebrate when I was driving home from my last treatment.

But I really didn’t feel like celebrating.  I didn’t feel the joy I thought I should feel when I ate that celebratory lunch.  I just remember feeling I’d lost my tools, I no longer had any way to fight my cancer, to keep it from coming back.  From now on I’d just be waiting to find out if a single cancer cell escaped the peritoneal and IV chemotherapy and would cause my cancer to return.  I actually tolerated chemotherapy well once we knew my side effects and how to prevent them.  Chemo didn’t cause me nausea or make me tired.  I’d never vomited because of the chemo.  I was always able to eat well while on chemo.   I trained for a bicycle century (riding 100 miles in one day) while on chemotherapy.  I would have been happy to stay on chemo for the rest of my life!

Interesting, but everyone else felt I’d made it!  I was done!  I could go back to my before-cancer normal life!   I was cancer free!  They’d supported me through it all, now they could take a break!

But my before-cancer normal life was gone.   I had to learn to live with uncertainty.  I never knew if I would have a future. I’d read my cancer recurred 80% of the time.  I couldn’t make plans for a vacation down the road.  I could only plan my life between CT scans.  If a CT scan was clean, then I could relax and enjoy my life until my next CT scans, every 3 months at first, then every 6 months for several years.   I couldn’t plan vacations, I couldn’t even say the words “next year”.

Things got better when my scans were once a year, but I still lived with uncertainty.  I still suffered “scanxiety” every time I had a CT scan, wondering if my cancer-free life would be over.  Surviving 5 years helped, but not a lot.  I’m old enough to remember when in the past, being cancer-free for 5 years meant you were cured.  No one uses the “cure” word now.  Even though I am currently an 18 year survivor, I am still not cured, just in “long term remission”.

Against medical advice, I quit getting CT scans and seeing an oncologist at about 10 years after my surgery.  That gave me peace, helped me move forward, helped the uncertainty fade.

I know many will feel your struggle is over once your finish treatment, but in some ways, the struggle is just beginning when treatment is over.   We need as much, maybe even more support, when we are no longer being treated for cancer.