Let me preface this post by saying I am not an expert but I am a stickler for lists and project planning. I spent many many years as a project management professional and although it was hard for me to really "plan" and "research" my illness, I have found that I was lucky enough to just do it without thinking. It is the way I am. I have goals and plans and I try to meet them - but with breast cancer, you are truly not in control. The best you can do is try to think about these quick, simple "rules" to start your new life as a part of the club you never, ever want to join.
My quick rules I made into a instagram are posted above but once I put the pen to paper (so to speak), I made some adjustments. My updated tips are here:
1a) If you are diagnosed on the phone (as I was) try to arrange an appointment immediately with a trusted doctor (for me, it was my gynecologist, for you it might be your primary care physician). It was extremely helpful for me to have information from my doctor and I wound up using the information given to me to ultimately pick my treatment hospital.
1b) If you are told in person, try to have a family member or trusted friend at the appointment (even if via cell phone speaker phone, if need be) to help you take notes, ask questions and just absorb the information. Whether you are prepared for the information in advance (like I was) or it comes out of left field, you will be spiraling in your mind, which makes it hard to really understand what is being said or what you should ask.
2) If you can find a fellow person who has been through the process, either in real life or online, connect with them and see if it is okay for them to be your guide through it. As much as family, friends, doctors and nurses are awesome they just do not get it unless they have been through it themselves.
3) Have an open mind when you are meeting with doctors and hospitals - my original plan was to stay local. I was quite adamant about this despite being a stones throw away from world renowned cancer centers and ultimately chose to be treated at Memorial Sloan Kettering - (for more on my decision read --> managing-diagnosis-from-super-woman-to-cancer-patient-in-two-seconds-flat.html and managing-diagnosis-part-2-superwoman-to-cancer-patient.html). For you, make sure you are comfortable with the doctor and facility as much as you can be and also trust your gut instinct. I had many many hospitals to chose from being so close to NYC but after I met my surgeon at Sloan, I knew it was the place for me. Everyone there treated me like Lisa - they loved me even those who didn't love me I just felt loved and cared for every visit.
4) Important: Leave your media influenced understanding of cancer at the door - this is not a novel where the character automatically dies of cancer nor is it a TV show where every one with cancer is cured within the half hour by a surgery. Cancer is a world full of new vocabulary, protocols and information. You should not assume anything about what the cancer is in your body. There is not a clear cut way to be accurately staged until surgery (at times). The tests and scans that are done on your body pre-operation are not 100% accurate. Also, after surgery, you will not be called, "cured" - you will be monitored and checked either every 6 months (or sooner or less frequent) and once you get to a certain point, you are called a survivor / cured and not before. For someone like me who wants to get to the finish line of anything I attempt to do, this has been where my new focus on mediation and just letting go has allowed me to just wait and see where this all goes. I was not like this during pregnancy - I wanted to get to delivery ASAP and did not enjoy waiting. Now, I am enjoying the time between but for you if you can't just try to do whatever you can to not think about it. (I am writing another post about tricks and ways to do this.)
5) Do Not Google Your Illness - seriously - I am the biggest research nerd I know and even I know I cannot handle what Google will tell me about Breast Cancer Stage 3 - I prefer to leave the research (and worry) to my doctors and medical care team. If you can learn and/or try to do this, you will be happier. I am not saying do not understand your illness but try to avoid the World Wide Web because the good Dr Google has no idea about the nuances of your disease, your health history, etc. I do agree with reading some heavy books about how to handle life with cancer but so far almost 9 months post-diagnosis and I have only read one book (AntiCancer) and I am working on a review of it.
6) Make sure you check out my tricks for treatments tricks-for-treatment.html for preparing and surviving chemotherapy (if you need to get it).
7) Learn to let go - do not force people to be there for you but do embrace help if you can. Most people cannot handle someone they know getting diagnosed with breast cancer and can do and say the weirdest things (I shared my experiences with this here what-not-to-say.html). That being said, friends old and new just being there for me and texting/calling/visiting were amazing ways to keep me focused on the end game - beating cancer's ass.
8) If you have young children (as I do), tell them as soon as you are ready to - I will write more about this in the near future - every mental health professional I have met either at Sloan or elsewhere have all said the same thing that telling your children is more necessary than you think. Children are smart and know when something is not right so by not telling them, they get more scared than if you do tell them.
I think 8 quick tips is enough; there is more to come, though but since we are in August I thought 8 would be enough :).
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