Having undergone a total of four breast surgeries over five years and radiation, I understand how it feels to be overwhelmed with the process of treatment for breast cancer. I love to share my experience and give advice. Sometimes it can be very unorthodox. But I am trying to be authentic and straight forward. No pussy-footing around the topic of the “C” word. So here goes…
1. Make “Fighting Cancer” Your Job:
When bestowing advice to those recently diagnosed, I always advocate for them to get organized as if they were starting a new job. Think of yourself as a “professional patient”. The process of doctor visits, undergoing diagnostic testing, and reading medical reports can be very overwhelming, so I feel It’s best to stay organized. If you are a control freak, then this is where you will shine. I advise getting a binder with tabbed sections and a 3-hole punch for all your paperwork. Ask for copies of everything everywhere you go.
2. Don’t spend too much time “Doctor Shopping”:
I am not saying that I don’t believe in getting a second opinion, however, cancer can move fast. I advise that you don’t take too much time getting second opinions. In my experience, I was diagnosed in April 2010, and by the time I had my surgery a month later, my cancer went from “non-invasive” to “invasive”. I recommend that you stay within a group of doctors so the communication is streamlined and cohesive. If you have too many clinicians outside of a group, getting access to reports and waiting for them to speak on the phone with each other can become problematic.
3. Find Humor in Everything:
Yes, the boobie jokes are endless. And, let’s face it, modesty goes out the window when you are going through the process of diagnostic tests, surgeries and doctor follow-up appointments. I found comedy to be a great coping strategy. I always made jokes with the staff to cut the tension in the room. Sometimes if you really look around the room and note the ridiculousness of it all, you can give yourself a good inside giggle. You interface with so many random clinicians, it can be a good way to instantly connect and build a rapport. Which brings me to my next tip…
4. Humanize Yourself to Staff:
When you connect with clinicians and staff members, you will notice the ease in making appointments, communicating about test results and getting key people on the phone. From the perspective of being a clinician myself, we see so many people that it can all become a blur. You can be the most empathetic person in the world, but if you treat 100 people a week, you can’t help but get monotonous with your patient care. I always made it a point to converse with people and give them something to help them remember me. I know I will get flack for this bit of advice, but I found it helpful to have people remember my name because of a joke I told or a little anecdote that stuck in their mind.
5. Take Pre-Surgery Nudes:
My breasts were probably the only part of my body that I was happy with. I am so bummed I didn’t get any pics of them before they were removed. There are many photographers that do “boudoir shoots” to get some sexy shots for posterity. I am hoping to do one now, since I’m feeling so down about my body. I hope it will inspire other women as well. But I’m not there yet. It’s going to take a while and I’m not beating myself up about it. So, whatever you feel comfortable with, I say go for it.
6. Educate Yourself on Basic Medical Terminology:
I was lucky that I was able to read my own medical records and understand what was going on. I can’t imagine what it’s like for the layman. I equate it to receiving my medical records in French. So, I recommend learning some basic terms. Get a copy of your reports or clinician notes, highlight anything you don’t understand and bring to your nurse navigator. Yes, make sure you have a nurse navigator. If you don’t…speak up and request one!!!
7. Seek Out a Friend in the Medical Field:
It can be comforting when you have someone to walk you through the surgical process beforehand from the perspective of the clinician. The more you come to terms with the competency of the people working in healthcare, the better. I feel, because I work in healthcare, I am more trusting. I’m around it. I know people know what they are doing. I recognize that no one is out to maliciously screw up and put you in danger.
8. Set Post-Treatment Goals:
It can be inspiring to think ahead of new adventures. Life’s challenges can spark new ideas and lead us to new experiences. Sometimes we need that “slap in the face”, so to speak, in order to push ourselves out of our comfort zones. So, when you are recovering, feel free to dream big of new hobbies, or road trips…something you’ve never done before.
9. Keep Some Form of a Recording of This Time in Your Life:
I found it very therapeutic to document where my state of mind was before and after my surgery. It can be sad, but it showed me how far I came. Even if it’s a video journal, which may be easier to do, get something for posterity. It’s also helpful for me now that I’m making my decision to undergo explant surgery. Now I see that I actually looked pretty good flat!
10. For God’s Sake – Let People Help:
Please don’t try and be a hero. I know it can be very difficult for most of us women who are always in the caregiver role and feel comfortable there. Believe me, people WANT to help. In this situation, where they feel helpless, it will actually make THEM feel good if you delegate tasks.
Janice M. Woerner, M.S., OTR/L is an Occupational Therapist, mother, blogger, and breast cancer survivor. She is the founder and key contributor of JGH&W.com. Janice is a clinical educator and advocate for those afflicted with cancer and their families.
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