In my fantasy world, once a patient is told they have cancer, things move along very quickly to give them the fastest and best possible treatment necessary to get rid of it. That is how it is in on Lifetime Movies and in novels anyway. Once the patient has been given the alarming news of their cancer, within a week or so, every local and nationwide expert is at their service and helping them to beat the disease.
Four weeks ago tomorrow (Oct 19, 2011), I got a call from my Gynecologist telling me I have Grade 1 endometrial cancer. I had gone for a check for some abnormal bleeding and a biopsy had been done 2 days prior to this call. It is a call that nobody wants to get. I didn’t flip out or faint or anything, but I was quite shocked and frightened by that call. My personal Gyn’s recommendation was to seek robotic assisted total hysterectomy. That means that a doctor spends his/her time at a console with a magnified 3 dimensional image on a screen and he/she is controls the 4 arms of a Da Vinci robot, while it removes my uterus with cervix, my fallopian tubes, ovaries and some surrounding lymp nodes. I had the presence of mind to ask how urgent it was to get my cancer taken care of. She said certainly I would not want to wait a full year, but that I probably should get it done within a few months.
Her response to my question allowed me a little time to do some online research, consult with my Patient Safety colleagues, and make some phone calls. My Patient Safety activism has taught me about what and who to seek out and the appropriate questions to ask. I did my homework and made a determination that a GYN/oncologist in Portland, ME and Maine Medical center would be my choice. It is tough to decide who to trust with your major surgery. I called my personal GYN’s office again and asked them to make the referral. Apparently, we patients are not accepted on a self referral. I know, because I tried.
I took 9 days to make my choice. It took 4 more days to get an appointment. Total so far 13 days. On November 1, I was given an appointment on November 30. Tomorrow it is 28 days (4 weeks or 1 month) since I learned of my cancer. November 30 will be 41days. Then I don’t know how long after that before my surgery will be scheduled. That “couple of months” recommendation is frittering away. I honestly never dreamed I would have to wait for a full month to see an expert GYN/oncologist for cancer surgery.
I am a little nervous about this wait. In fact this wait is agonizing. I took a day to cool off before I called my carefully chosen Gyn/oncologist’s office to ask about the wait. I spoke first with the intake people. I was put through to the office manager, so I still have not spoken to a nurse. The office manager was calm and kind and assured me that they “triage” all of the patients that are referred to them, and schedule accordingly. I expressed my concern that my cancer could grow and spread and perhaps that would impact my healthcare outcome. She then offered for me to be seen 1 week earlier by a different doctor (a male). I decided to stay with my chosen doctor because she is a woman and because of her experience.
A few concerns have grown since I made my choice. My doctor is only in her office one day a week. I’m not sure if that is because she is so busy doing surgery or other OB/GYN/oncology things. My other worries and concerns would fill a book. I might write about them at a later date.
I have decided to use my time before surgery to do some proactive things. I have spoken with 2 expert GYN surgical nurses. My list of questions for both the doctor and the Hospital has grown exponentially. They are going to hate to see me coming, but I have a right to know these things….so does every other patient.
I am also trying to eat better …less sugar and fat. That is a tough one for me. I’m also trying to drink more water.
I continue to study my condition, alternative treatment (there aren’t any), complications etc.
I am walking every day.
I am purchasing a few things that the “Hystersisters” online recommend. The Hystersisters is an online forum of women who have had or are facing hysterectomies. I got one of those picker upper thingys that old people use to pick up things from the floor or reach into a cupboard. Apparently, bending and reaching can be painful after hysterectomy. I will also get an abdominal binder. I had no idea those were still in use, but the Hystersisters swear by them. Apparently these lightweight girdle type garments help to prevent fluid buildup in the belly after surgery. Also, one of these sisters said that gravity is not your friend if you have a big belly….and I do….and this binder can help prevent discomfort when bending, standing etc.
I am sewing comfy PJs. Jonnies will just not do for me. I need better and bigger coverage.
Soon I will pack my little dittie bag for the Hospital to include a warm afghan, socks and slippers, a personal photo of my family and dog, my journal, my cell phone and charger, and my Patient Pod, a brand new product that a co activist is promoting and I will use one to help her promote it.
So, I don’t really know if this wait will impact my prognosis, my cancer, my treatment or anything else, but since I don’t seem to have a choice and we can’t control everything, I am doing some things in preparation for my surgery, my hospital stay and my recovery.
And, I will celebrate Thanksgiving with my family. That is very important. Who knows what condition I will be in at Christmas? That is one more demand I will have…I will not have surgery close to a weekend (sometimes means less staff and longer stays) or late in a day (may mean an extra night in the Hospital or a dirty operating room or instruments) or during a holiday week (less staff, less safety, sometimes longer stays). So, I have a very huge hope/expectation that I will be the first surgical case on a Monday or Tuesday sometime prior to Christmas week.
This is what waiting is doing for me…..although it is agonizing….it allows me time to plan my safest healthcare experience. I still hate this waiting…………………………..