Rather a large and major omission, no? What did you think was going on? Did you think you were losing your marbles? Not so smart from the "be in a good mental place in order to maximize your healing" strategy point of view; sounds more like adding insult to injury. Why do you think that the doctors do what can be considered an incomplete job at a very critical time?
Feeling like I was losing my mind was worse than losing my breasts. Chemo brain was unexpected. I had no warning and had to ask my doctor what was happening. Doctors treat the disease, not the side effects. And when they do address side effects, there is usually a prescription involved and no holistic guidance. "Healing" the patient is different from "treating" the disease, especially with cancer when "treatment" can make the patient feel sicker. I felt perfectly fine until I started chemo which made me sick. The patient must be proactive about her well-care by being vigilant about diet, hydration, exercise, sleep and stress management which can reduce the impact of most side effects. I am also a believer in patient navigators or peer support, who can help you understand what is happening to you and how to deal with it, That was my intention writing my book, Getting Things Off My Chest.
It sounds like there's a huge role there for patient navigators, whatever they are. Is this a role that exists within the health system, supplied and supported by medical facilities, or an import from outside to address a lack? Tell us more, please.
Patient navigators are a growing field and an important service. There are many different types to help you through areas of concern including, medical, financial, well-case/lifestyle. Most hospitals hire and provide patient navigators to help you through the system. I underwent training as a patient navigator through the Harold P Freeman Institute, a pioneering program in New York City. When you are diagnosed with a major illness, a patient navigator is a valuable asset to pave the way for you since you will be totally confused on what to do.
Nice! Are many of the patient navigators cancer survivors like you, Melanie? And what is "well-case/lifestyle" that you refer to? That's a new one for me.
Sorry, I meant well-care/lifestyle, not well-case. Well-care means caring for yourself - aka 'wellness" and making a healthy lifestyle changes. As a health coach, my goal is to help cancer survivors make healthier lifestyle choices to have a better recovery, adjust to their new normal and reduce their risk of recurrence.
Patient navigators undergo training to address the different areas that a patient will experience. Examples: dealing with the hospital finance department and health insurance, understanding medical terminology and what they mean, coping with side effects, Many navigators specialize in helping cancer patients but the service can apply to anyone facing a major illness. The Harold P. Freeman Institute Patient Navigation Training Program is pretty much the gold standard.
What a great idea! Most patients find themselves reeling from their illness and are simply overwhelmed by all the myriad details, however important they may be. Cancer is a toughie, no matter what. Losing a breast, or in your case, two involves so much more regarding our self-image, the way society looks at us and everything else. How does one deal with that? How did you?
I gave up two breasts to save my life. I had the choice to reconstruct and I selected silicone implants. It took about a year to complete, several office procedures, three surgeries and some tattooing. It was painful and required patience but was worth it and, as of 1998, breast reconstruction following cancer surgery is covered by your health insurance.
As it should be.
Breast reconstruction is a huge boost to your self-esteem. I worked hard to get my body in great shape, now have two gorgeous new breasts, a few scars and the rest of my life to live with more intention and in better health. In a final act of accepting my new body I posed for The Grace Project in March 2013 as part of an exhibition capturing the grace of women who have had mastectomies. Here is information on this project.
I just went to the Grace Project website. In a word: Powerful. You discuss preparing for cancer treatment as analogous to training for a marathon. Can you flesh out that image for us?
You need to prepare your body for surgery and treatment, both physically and emotionally. It's like training for a marathon because you want to be in the best shape possible to stay strong and keep your stamina. Cancer takes it out of you.
It is important to start a cleaner diet, go off all drugs even ibuprofen (bad for bruises) and nutritional supplements (unless your doctor states otherwise). You need to build up your body strength because, with a bilateral mastectomy and also reconstruction, you have little or no upper body strength for a long time! Working on building your lower body strength and core muscles is important. Your hospital will give you a set of exercises for your upper body. It took me almost three years to regain full upper body strength but, event today, I have some permanent limitations.
Physical exercise will also counter stress and improve ability to sleep. If yourbody is in good shape it will heal better. I also advise meeting with a nutritionist or health coach to review your diet and discuss ways to make changes that are right for you.
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