the ever present threat that cancer may recur
Updated: Aug 11
NED stands for: No Evidence of Disease. It covers the unspeakable threat always in the back of the mind. The threat that cancer may recur. Again, and again.
A friend recently called. She had something important on her mind: “You just need to know, that everyone cries when they finish their chemotherapy. That’s normal,” she assured me. She was speaking from experience.
Her words have been whirling around my brain ever since. I did not cry when I got my diagnosis, and I will not cry when I finish my treatment. But I understand so very well what she wanted to tell me. Because it is frightening to face the big, empty nothing that is life.
Ordinary life without the three-week poisoning cycle, which has been a regular routine for about six months: First a huge shot of poison followed by a week in which I float between an euphoric high from the steroids that keeps the nausea and other side effects away, and then the unbearable fatigue.
Week two, with a reduced immune system where special attention not to expose oneself to coughing and sneezing people is required.
Finally, week three, where I have occasionally been able to forget about the disease and the poison that slowly is being excreted from my body. Only to be called back to realities: a new round of blood tests have to be taken before the next treatment. The reminder that it is still not over.
For as long as this has been going on, I have been embraced by caring, positive energy and love. Nurses and doctors, friends, acquaintances and colleagues have all been kindly interested in my health. Have inquired about side effects, my wellbeing and mood.
Those closest to me have offered to shop or walk the dog, have driven me and have come by with soup and nutritious meals.
Several friends have traveled a long way to cuddle and care, cook more soup, read aloud, and join me for long walks. Does that all disappear, when the treatment ends?
“During the surgery, we removed all visible cancer. Any remaining microscopic remnants should be taken care of by the last three rounds of chemotherapy,” Dr. Korah, the senior oncogynecologist explained.
I was flanked by both my adult children for that conversation, to be absolutely sure that we all understood what was being said. The English-language term used at the end of a successful treatment is NED, which stands for No Evidence of Disease. It covers the unspeakable threat that will always be in the back of your mind.
The threat that cancer may recur. Again, and again.
There is no maintenance treatment that can help keep the disease away. If I believe, that it helps to eat lots of green stuff, not eat sugar, not eat dairy nor meat, that is fine. The oncologist will speak neither for nor against one or the other. He knows that the fight against the good advice circulating on social media is lost.
“If there was any evidence that turmeric does the job, we would be giving each patient a kilo of it to take home,” Dr. Korah emphasized. “What then?” I asked. “The most important thing is to be positive and return to normal life come by every two and then every three months for a check and tell us how it is going,” he responded.
So many people have told me of the check-ups that arouse nervousness and horror several weeks in advance. For a long time already, I have thought that it is necessary to reverse the understanding of check-ups. My understanding is, that we, who have been ill have been given an extra gift – we are watched over better than anyone else is.
“Plan a trip,” my onco-gynecologist added with an insistent caring smile. By sheer luck a few days after that conversation, a message came from the kayak club that there is a six-day kayaking trip to Cinque Terre in Italy. Exactly two months after my last round of poison. On doctor’s orders, I signed up!