Prepare yourself for juggling multiple appointments with varying specialists, exams and tests. There is a logical progression of appointments but some may overlap various phases of your treatment. Mammograms, ultrasounds, biopsies, CT Scans, surgery, blood work, chemotherapy, radiation and so forth. Not everyone will have the same treatment, so exams and tests may vary.
For me personally, I also had to have MUGA heart tests every so many months during my treatment, because I was on Herceptin for a full year, for example.
I also had a port (port-a-cath) installed in my chest for infusions because I would be getting chemo for 12 weeks, then the Herceptin infusions would continue for the rest of a full year. I needed an additional surgery for this.
It may feel overwhelming at first, but eventually it levels off and you’ll feel more in control.
A friend of mine used a 3-ring notebook with folder inserts and tabs for all of her contact information, scheduling and all documentation.
I ended up using file folders that I kept in a rolling briefcase I had on hand from my career days so that I wouldn’t have to load up my arms, plus there was the added benefit of storage for other personal items like scarves and gloves in the winter, toiletry items, medications you may have been prescribed, books/eBook Reader, like Kindle, device and phone chargers, and a spot to put some personal effects when changing in and out of hospital gowns for tests. I was given a locker for my clothes when changing into gowns for tests, but left other items in the small luggage beforehand that my husband held onto. With the blood tests and port-a-cath and other tests being done, my one arm felt like a pincushion at times and it took the strain off of the side where my port was inserted. One of the nurses had told me not to clench my arm after blood draws, for example, so that the area could heal. The roller case allowed me to stretch my arm and not overly stress it. I could hang my coat on it while in the waiting room, or stack my purse on it.
I had files marked for Appointments, Reports/CD’s, Notes, Contact Information, Receipts and Claims To Submit. I also kept a wirebound paper notebook for notes. If you have someone accompanying you to consults and doctor’s follow-up visits and other appointments, it’s a good idea to have a notebook for your companion too. You receive a lot of information in a short period of time and it helps a lot to have two people taking notes. It can be very difficult to focus when you are still processing the fact that you have breast cancer. I also spent time after leaving the hospital documenting everything else I could think of that wasn’t jotted down in hospital, and I detailed out what I did note for clarity when referring back to it later on. I also went over the visit with my husband because he often would write down something I missed or understand something that was said differently than I did. I emailed myself these notes which made them easily searchable. I kept a separate email folder in my account specifically called “breast cancer” where they were stored. The email folder is where I stored everything related to my breast cancer.
Eventually, by the time I was going through chemotherapy, I was only carrying two files in a light shoulder briefcase. One with upcoming appointments and one with all of my more critical contact and personal information to refer back to if need be. I left the other files in the rolling case at home to store miscellaneous pieces of paper that I might gather from that day.
I also needed to carry a booklet with me that the hospital had given me (called my Oncology Passport). I was required to bring it with me to each chemotherapy session. The oncology nurse assigned to me personally wrote all of the initial contact information I needed from the Oncology Department in it to get me started. The chemotherapy nurses wrote my weekly chemo treatment drugs and amounts into the booklet. The booklet also contained details of my treatment, pharmacy contact information, doctor’s names and contact information, as well as the nurse assigned to me alongside my Oncologist – basically my entire team. I also used the Notes section to log my weekly side effects from chemotherapy which I needed to report when meeting with my Oncologist at regular intervals of treatment. It was an all inclusive book of information that I will always keep handy, even after treatment has ended.
Try to keep everything related to your treatment in one location at home. The chemo brain sets in and you may forget something if in a hurry. I kept my rolling case, my shoulder briefcase and any active files I needed to refer to throughout the day, or remind me of my appointments on and around a small table dedicated to this. I only had to put my active files into my shoulder bag and grab my tote (see tote TIP, left column) that I left near the door when going to chemo. It was on this table that I also had a short list of What To Bring to chemo sessions that I could refer to in a moment’s notice. For instance, to remind me to put on my compression socks and grab my mobile phone if it was charging overnight.
You have other things on your mind. Make your life easier.
TIP: You are asked some of the same questions over and over again, depending on who you are meeting with. I typed up a page of key medical history events and dates. Make copies. It’s easy to hand the doctor the sheet to refer to while you are going over your history. I was not on any medication previous to the breast cancer, but they may also repeatedly ask you this as well. I used some nutritional supplements, which I listed out. Have your lists handy.
TIP: Keep an up-to-date list of all contact information, especially Emergency numbers. Hospital numbers, family physician, and the pharmacy that you use. You will refer back to these a lot. I even wrote some of these key numbers on the front of my Appointments file folder. It was always within reach.
TIP: Keep a running list of questions you have for your doctor in between visits. Chances are, you won’t be able to remember them all and it is important you have all of your questions and concerned addressed. If you do not understand the answer, speak up. Repeat it back to them to be sure you understood the information correctly. And write down the answers.
TIP: Take advantage of the digital applications and message systems your hospital might offer patients. You may need to ask. I saw posters for registering for an SMS system (Short Message Service), inquired, then signed up. It let me know, via a direct message to my mobile phone, when the doctor was ready to see me, or when my treatment unit was ready for my chemotherapy infusions. It gave me the details on where to go, room number or chemo unit number. I always set my phone to vibrate when I entered the hospital, and that worked great. It is handy if you wander away from the waiting room for a cup of coffee, tea or hot cocoa, or if you use the restroom. You’ll always know when you’ve been called.
Enter important information and phone numbers of your hospital or treatment center on your mobile phone. Along with the hospital details, I entered all of my team doctors and nurses and other information important to me in the Notes section within my hospital Contact.
I also installed an app on my phone that the hospital was offering. It recorded all of my blood test lab results, with graphs to show results over time. The individual tests, like white blood cell count (WBC), Neutrophils or Platelet Count showed what your count was and how it compared within the Normal Range. You could also link to learn more about each result. There were also some reports and some medical records (the application was being expanded over time). Handy, was a nice calendar showing all upcoming appointments. The dates were marked on the calendar as a day of an appointment and you could select that date to see the appointment(s) and the details. Very handy to have. It also let me know that I successfully checked in at the electronic Check-In Kiosk, sending me a text. Check with your hospital if this is something you are interested in.
TIP: I kept a zippered tote bag to carry what I needed during the chemotherapy treatments. I carried my own fleece blanket, fleece gloves, some warm slippers, along with lunch or snacks and a fairly large jug of water. I was often cold after sitting for the 3 hours or so of chemo, and it always occurred during lunch for me. Plus I had a fairly long drive to and from the hospital, so needed to have food with me. I kept my reading material in my briefcase with my folders but it could have just as easily gone in the tote bag. I kept both the briefcase and tote bag ready-to-go so I could just grab it for each appointment. I also had a small list of what to bring to refer to so that I did not have to rethink it each time. We were also allowed to bring coolers if need be. The staff wanted us to be relaxed and as comfortable as possible.
TIP: Once you have a sentinel lymph node removed during surgery, you can no longer use that side’s arm for blood pressure readings or blood tests. All tests are done from the opposite arm, which you need to remember. The nurses will typically ask you this before doing any tests. This included, for me, the two injections for the MUGA heart test, and any other scans or tests that required an injection.
TIP: When getting blood drawn, or even injections into your veins, afterwards, try to relax that arm where the needle was used until it heals up. Extend it, versus clutching it. Typically the blood is drawn in the crook of your arm where you naturally bend it. I was told by a nurse drawing my blood one day that bending the arm can cause more bruising. So just let it rest the day of the needle-poking.
TIP: Out of Town Lodging. In the United States “Facing cancer is hard. Having to travel out of town for treatment can make it even harder. Yet the American Cancer Society has a place where cancer patients and their caregivers can find help and hope when home is far away – an American Cancer Society Hope Lodge.”
For Canada, check with your hospital or cancer center for lodging information for the city where you are being treated or contact the Canadian Cancer Society for help. Examples below.
If being treated in Toronto, “Princess Margaret Cancer Centre Lodge is a unique place for out-of-town cancer patients who come to Toronto for treatment. It provides a “home away from home” for short-term stays.”
If being treated in Montreal, “The Jacques-Cantin Lodge offers accommodations in a calm and peaceful environment to autonomous persons who receive cancer treatments in Montreal. Special attention is paid to the needs of residents. The objective is to provide all the amenities necessary, with the warmth and comfort of home.”
Helpful Links
https://www.cancer.gov/publications/dictionaries/cancer-terms/def/port-a-cath