Finding the Right Care Team for Me
So hard to believe that it will be one year since my diagnosis on April 24, 2018. If you asked me what I would have done differently, I would say not to stay with a doctor who provides you with a “toxic” environment. You need to surround yourself with positive and encouraging people including the administrative and nursing staff.
My initial HCP experience
My first oncologist seemed to be interested in hooking me up to chemo and prescribing invasive procedures for further diagnosis. Additionally, her staff seemed cold and uninterested in me as a person and all was very routine. A typical visit included the following: You signed in and barely got a “hello, how are you today?” A nurse came to get you. She inquired on how I was doing, took my temperature, weighed me and went over my medications. My medications that consisted of mostly of vitamins, were never recorded accurately after I carefully went over everything with her. The doctor came in and although she listened to the many new avenues I was taking – ketogenic diet, acupuncture, naturopathic consultation, nutritional consultation, massage, personal training, and daily exercise. She would simply nod. My impression was that she did not think any of these modalities would help me. She checked my heart beat, felt around my neck for any lymph nodes and then we were off to the chemotherapy area to get my monthly shot of Xgeva.
The nursing staff in this area were very interesting…barely a hello or a sign they recognized you from the last month. They babbled on about their lives interjecting with “we will be right with you.” I also observed their treatment of patients that were there for chemotherapy. There was one day that really infuriated me, and I thought if I was receiving chemo that day, I would have been upset to hear their personal conversation centered around how they had to lose weight! All around them were patients who were very thin due to treatment. Could the staff have served these patients better by taking the time to get to know them by making a little conversation with them? It was clear that the nurses did not want to get to know the person in the chair.
Need a new care team
After eight months, an acquaintance came to me and reminded me how toxic this environment had been and would be for me going forward. Yes, this doctor was conveniently located near my home and so was the hospital for tests and scans but deep down, I knew I had to make a change. A few friends with cancer had shared stories of their oncologist. Some good and some bad but all the information was helpful. Finally, I settled on a young, female doctor who was located 30 minutes from my home. After our first meeting, it was clear she “got me” and went so far as to say, she would like to learn more about naturopathic medicine. For me, it was a dream come true to hear she wanted to learn more about alternative medicine!
Communication with your care team is key
My first oncologist (who was also female) would never make a personal phone call to me directly to discuss any test results or unusual blood work. I am happy to say that my new doctor calls me. From the beginning, I told her – call me and let me know what is going on. I am happy to take the bad news well. Communication is key.
Here is something funny to think about. When my dog is sick, after the initial visit, the vet calls to ask how he is doing? Why don’t human beings get the same treatment? Is it unique to find a medical doctor who cares enough to get to know you and who will make that personal call when necessary?
I feel free with the right medical staff supporting me
My new oncologist and my monthly visits are refreshing. Her staff cares and in just a few months have gotten to know me. Happy to say, this change has freed me, and I am no longer feeling afraid of what each visit will hold; rather, I am inspired to live my life with great hope and joy.
Editor’s Note: It is best to check with your healthcare team before starting any new supplements or diets.
Editor’s Note: We are extremely saddened to say that on November 5, 2019, Linda passed away. Linda’s advocacy efforts and writing continue to reach many. She will be deeply missed.
Have you gained new friends in your metastatic cancer journey?