Sometimes the best thing you can do for yourself when you are dealing with Cancer is remember to network. No matter how sick you are, make a friend in the medical community who has got your back. If you can't do this, ask the most personable member of your family to do it for you. Think of who might be likely to go to the mat for you if they had to? If you can't think of any person to ask, keep your eyes open, someone from the medical community will cross your path who fits the bill. It doesn't really matter if this person is a Doctor or a CNA, they just have to be intelligent and resourceful. For me that person was Kandie, the Referrals Specialist at my General Practitioner's office.
Oddly enough, I really did not know Kandie before my Ovarian Cancer diagnosis. I may have talked to her a few times on the phone when calling in for an appointment or asking a question. I know for sure that she was not a person who I remembered when I left the Doctor's Office.
Our relationship changed completely after June 3, 2012. I hope this blog lets her know just how much her help meant to me both then and now. I am not exaggerating when I say that I would not be alive had it not been for Kandie's help! To this day I can call her and she listens, makes suggestions, and follows through with a positive attitude that keeps me going.
Here is why Kandie was so important to me. You will find when you are sick that many medical people will hit you with a number of different suggestions, directives, and commands that you will have to sort through. You and your family have the job to decide what information to ignore, what to file away for later, and what to do now. Keep in mind, just because a doctor tells you that you must do something does not mean you have to - your job as a patient is to decide what you are comfortable doing.
When my journey started I had no less than three Oncologists, numerous nurses, a General Practitioner, and a Gynecologist. Everyone had an agenda, and everyone had a list of things for me to do. I was really not sure who to trust? So I decided to ask the medical professional I had the longest most trusted relationship with if they would manage my case and all the paperwork. I knew going in that this Doctor was not the person who everyone assumed would be managing all my treatments. I decided that it was most important for me was to feel as if I had control. At the risk of offending everyone, I asked my General Practitioner to manage my case the minute I was released from the hospital the first time in mid June. Normally this is the role of the Oncologist. Fortunately, to his credit he said he would handle my case and any referrals I needed from his office.
The first task for all of us was to decide how to handle my upcoming hysterectomy and tumor removal? My Oncologist was doing the surgery in four weeks. I was already so sick from chemo that I was terrified that if I was left home alone after surgery on a daily basis I might not make it. I was informed by my Oncologist that I would need no nursing care during my recovery from surgery. The insurance company also told me that I did not need a nurse. I had a nurse after my release from the hospital the first time (when all I had was chemo) and I was puzzled by the fact that I would not have one after surgery? My husband works, my family works, and no one has a medical background. I mentioned my fear of being without any nursing care to my GP. He was able to suggest a way that I could have nursing care at home through a Hospice Program for people who were not dying. He told me his office would look into referring me.
A day later, Kandie the office Referrals Specialist called me at home. She asked me a bunch of questions. First and foremost she wanted to know why she was referring me to hospice if I wasn't dying? I told her what the Doctor and I had discussed and she told me she would get back to me shortly. She called me back the next day and told me that she had spent most of the day investigating programs for me. She said she finally found one she thought would work for me and told me they would be calling me soon. She is such a wonderful person, she told me if I did not like them or if I needed anything else I should call her ( and she sincerely meant it!) Kandie even checked in with me later to see if I liked the nurse that was assigned to me?
As my treatment continued, Kandie researched and found me specialists who could help me at every step in my journey. If I was too sick to talk, she called my husband. She found me a Counselor in my neighborhood who is only one of a dozen or so in the country who has a specialty in patients who are chronically ill. She found me a world famous Oncologist to give me a second opinion, and a lymph edema treatment center that was at the hospital I was comfortable going to ( instead of the one my Oncologist likes to go to). These are all services my Oncologists office could have done but she took them on because she took the time to learn what worked for me. She is also always available for a hug or moral support if I need it. She amazes me because she treated me like she would have treated her own sister!
The long and short of it is that you need to make sure that you use a positive attitude and make some friends among the people who are there to help you. It may not be the person who is assigned the job. It may not even be the person who should logically have the job. Simply figure out who you trust and move forward. Don't worry about what anyone has to say.
Please remember this article does not contain medical advice, it is just a helpful technique that worked for me during my treatment. You may find you want to follow the traditional channels and that is perfectly fine. The idea is to take from this blog what helps you and not worry about the rest.
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