My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Sunday, December 20, 2009

Control

I saw my oncologist for my annual visit this week (and I know how lucky I am only to be seeing an oncologist yearly now...I remember my very frequent oncology visits for many years).

I have a kind of fun story about my oncologist...the oncologist I saw for the first 7 years retired and moved to California. I liked her a lot. Being a nurse and knowing physicians in the community, I've always chosen my own doctors, and they are always the best. The oncology practice called me after my oncologist retired and told me they had chosen a new oncologist for me. I took offense to that, I told them I always choose my own physicians, I'd do some research and choose my new oncologist, thank you. The office staff told me the oncologist they'd chosen for me was a new one, they really liked him, and asked me to just give him a chance. I reluctantly said okay, I'd see him once.

Well, I fell in love with him immediately (in the medical sense)! We truly hit it off and the first time I saw him we talked for an hour and a half about new cancer research studies, integrative medicine, cancer genomics...all before he got around to examining me. I had been reading a book about integrative medicine that had just been published, he had been reading the same book. When I told him initially I had been evaluated by a surgical oncologist at a university hospital in Chicago who'd told me I had no hope and was untreatable, he immediately knew who the physician was before I'd said the name, and had had issues with that surgeon in the past. I left the office smiling and accepting the "I told you so's" from the staff after that first visit.

We again had a lot to talk about this latest visit. He is hoping to revamp the large oncology practice to make it more integrative. To have massage therapy, nutritionists, acupuncture therapy, exercise programs and a new building with a garden and a less clinical atmosphere available to patients. I think that is a wonderful dream. He said when that happens he wants me to be part of it, I would truly love that.

We got to talking about the emotional needs of cancer patients. We both talked about the depression we see in cancer patients after they finish therapy and are in cancer's "waiting room" without the chemo/radiation safety net. I had talked about the fact that in my experience in the cancer community everyone wants support from other cancer patients, but no one wants to join support groups. They have a bad reputation, no one wants to be around those who are "weak" and struggling. We talked about the need for there to be empowering support groups. In the past he had one called "Strategies for Success" that focused on maintaining optimum physical and emotional health, focusing on things one could do to help control cancer and prevent recurrence, ways to gain and maintain a sense of control after cancer. I think that is the kind of support we really need.

I think regaining control over our lives is crucial. I see so many cancer patients who pursue drastic dietary changes (only raw fruits and vegetables), who grab at anything that might give them a sense of control over cancer...meditation, visualization, vitamins and herbals, psychoanalysis to discover unresolved hurts that might have cause their cancer etc. etc. I tried some of that initially (visualization and meditation) but never stuck with it. I didn't change my diet (I still do McDonald's and fast food sometimes and don't eat enough fresh fruits and vegetables), but always wondered if I should. I think I, like all cancer patients, wanted to feel like I was still fighting, that I had some way to control my future and my outcome, that I still had tools. I wanted to feel empowered again. I wanted to own my life and my future again.

It would be great for cancer patients to be part of a program that promoted education into tried and true methods to reduce chances of cancer recurrence, that gave cancer patients a sense of control, that made them feel proactive once they completed treatment.

1 comment:

Daria said...

Carolyn, I haven't changed much in my lifestyle either. I don't know what the answer is and I haven't found anyone who seems to know what the answer is.

All the best to you ...