A friend of mine was diagnosed with breast cancer. I wrote this list to help her and thought it might help others too. This is a list of tips that helped me get through the trying days of treatment and recovery.
• Always make sure you feel confident about your main care provider. If not, change to someone else immediately.
• When choosing a care facility, don’t fall for advertising you’ve seen. Check for reviews including their rate of cure. I never thought to look for reviews when choosing my facility. Reading them opened my eyes to many things.
• Take a spouse, relative, or friend with you to caregiving visits so that you always have someone who can offer support, help you remember what was said, what to ask, and to be an advocate for your care. Sometimes they see things going on with you that you don’t recognize and this can be helpful to your care providers as well as to you.
• Get a handy calendar (or use an electronic one) as you will have lots of dates to keep track of. When you are tired or suffer from brain fog (or chemo brain) it’s hard to remember where to be when. Your calendar can be your friend.
• Keep paper and pencil near all your phones (or carry some in your purse). When you are called with procedure dates or other information, write them down. Include the location and directions (if needed). Ask how you need to prepare for the procedure and/or anything you need to bring (if not already advised). Don’t hesitate to ask the caller to slow down repeat information so you can write everything down.
• Ask about free resources available to you. Sometimes you don’t know what to ask for until you need it. Our local area provided many free services such as massages, reiki treatments, support groups, even a crochet group. There were also free, educational classes. I received a beautiful, free wig.
Doctor and Caregiver Visits
• I found that keeping calm and relaxed during any procedure helped it to go more smoothly. I would breathe slowly, close my eyes, visualize healing, meditate or pray.
• Keep a written list of all your prescriptions, doses, and prescribing doctor. I also kept a list of any vitamins or supplements as I was often asked about both. Also carry a list of any medications you're allergic to.
• Keep a running, written list of every test and procedure including name and date of the procedure, prescribing or presiding doctor, facility where it was done, outcome, and any important side-effects. Almost every time you have a procedure you may be asked about these and having a handy list makes it easier to remember and correctly state the facts. Even in today’s technology age where providers often have access to this information online, they may still ask or you may be required to fill out a form that requests this information
• I also kept a written list of side-effects that I updated monthly. This not only helped me remember what to report when I had caregiver visits, it also showed me progress as I began my recovery.
• I chose not to publicly post my situation on the Internet during treatment as I did not want a lot of arm-chair doctors to tell me who to see, what to read, what to eat, drink, take/not take. I relied on my caregivers for these things.
• I did have an invitation-only private group consisting of those truly concerned with my on-going care. They provided additional support to me.
• I had a direct line to several people who had gone through this before me, as I sometimes had questions that you can only ask a friend.
• Friends and relatives don’t always know the right thing to say. Sometimes you have to look the other way and realize that they don't fully understand because they are not in your shoes. Sometimes you have to educate them. Tandy Elisala offers a handy Insider's Guide on "what not to say" for caregivers. She also offers a Caregiver's group and a Cancer Survivor (Thriver) support group.
• I tried to always be considerate of others during all treatment and procedures. It’s a lot easier to get help from someone if you’ve been friendly and helpful then if you’ve been crabby and inconsiderate. I tend to look for the humor in the situation.
• Items I found helpful to take to chemo treatments included warm, non-slip footies; something to keep my mind occupied (coloring books, craft project (i.e. crocheting/knitting); paper and pen; any necessary meds; a sweater. My facility provided snacks, blankets, pillows, television, a comfy recliner, and helpful staff. I also had a fun child's rolling suitcase (purple with sparkles) that I rolled with me to all my visits. Easier to carry than a heavy purse.
• I always took my nausea meds after treatment, tapering off throughout the following days. They were my best friend.
• Especially when I was at my lowest energy, I found that even walking for a few minutes a day helped me feel better than if I did nothing but sit. At times, just a trip up and down the driveway was all I could muster. My caregivers had recommended I do this, but I forgot as my energy wained and had to be reminded.
• If your insurance covers it, your doctor recommends it, and you’re not allergic to it, definitely get the Neulasta® roboshots. They were fabulous for me and saved me a 40-mile round trip the day after chemo.
• The last time I had radiation was in 1985. A lot has changed since then so I cannot offer recommendations here. I did not have radiation in 2017.
• I decided to remain flat. I researched breast reconstruction and talked to other breast cancer survivors. After hearing all the pros and cons, I decided I would remain flat and not reconstruct. I had been through a lot and decided I didn’t want to go through any more surgeries, recovery, or pain. The Fabulously Flat Facebook group is the only cancer support group I have remained in as they helped me to feel confident about my decision.
• I prayed. I asked others to pray. Prayers should be specific and remember to pray the problem, not the cure. Let God figure out the right fix. Our angels and guides are always willing to help if we ask and if we ask in such a way as to untie their hands. When we try to script the outcome, that sets us up for failure. When we let go of the outcome and pray the problem, that opens the door to miracles. I talk about this in my book Prayer Superchargers.
• I had several symbols that I used as signs that everything was as it was supposed to be. These were not necessarily items I pre-chose, but just kind of happened along the way. They showed up often - always when unexpected. For example, when I sat down in the cancer center's registration office, the gal had a butterfly paperweight sitting on her radiator. It was an odd place for it to be, but butterflies are a big symbol for me.
• Particularly late at night when I couldn’t sleep, I would use healing visualization. For one, I would remember how Rev. Shirley Caulkins Smith, a deceased Lily Dale medium and teacher, would tell us to imagine “sparkling golden goo” flowing into the top of our head and down and throughout our body. I would visualize that goo and see my body glowing. I also had visions of an all-white healing room in a spaceship lab. I would lay on a table and a rainbow of healing, colored lights would zigzag from above and down into my body. (I had no idea this might be a real thing until I later read about such places online.) One night I dreamt that Shirley and Sylvia (my best friend’s deceased mother) came and healed me. I woke during this dream and just lay awake in the dark allowing that healing to sink into my body and soul.
• Be vocal! Don’t be afraid to ask questions and keep asking until you understand. Don’t be afraid to stop someone from doing something that you know is wrong. Make them double-check or ask for a doctor or supervisor. I have been known to threaten to pull out IVs etc., so be aware of what they are giving you and be in charge of all that is going on to you (or have someone with you who can do this for you).
• Don’t be afraid to rest when you are tired and let things go that don’t matter (dust bunnies will wait). Say yes to those who can provide real help. Graciously say no to those who will only cause you more stress. They don’t understand how even a conversation can tire you out.
• Every day possible, I got up, dressed, and put on makeup. Sometimes I needed to rest for a bit between each step, but I did it. This always made me feel better as I looked odd enough without hair and being so lethargic. If makeup isn't your thing, find something special to do each day that gives you a little lift.
• I tried a lot of different bras trying to find ones that were comfortable, affordable, and durable. One of my favorites is this one on Amazon. However, I've also come to love AnaOno.com. They were so helpful and kind. The first one I had to return, which was so embarrassing, but they were gracious about it. The second one I bought (this one) is the most comfortable bra I have ever worn. They will work with you if you have insurance and also provide bras for those with limited incomes. (And, no, I have not been paid or given anything to say this.*)
• Yes! It was horrible losing my hair. I decided to have it cut short and donated the length to Pantene. Later, I had my husband shave my head, which he said was the last thing he ever expected to have to do.
• My head felt spongy so I kept it protected under beautiful scarves during the day and soft crocheted hats at night. I wasn't up to making my own, so I bought some on Etsy. SueStitch was so kind and helpful. Her little fuzzy hats were perfect to sleep in. I bought a brown one that kind of looked like I had hair.
• I'd read that you should use some type of mineral oil but didn't know what to use. I had already been using Ouidad's Oil Cleansing Shampoo, so I just kept using that. It seemed to work great. You only need about the size of a dime each time, so even a little bottle lasts a long time.
• I wasn't shy about showing my baldness to friends, who I found were simply curious. I didn't like the looks I got in restaurants and other public places, so I wore my wig there. The rest of the time I wore scarves. There are a lot of videos showing you how to wrap scarves. Later I found there were headband wigs. I wish I would have known about them when I needed them. Easy to put on and a lot of fun too.
• If you lose your eyebrows and eyelashes like I did, here's a video to show you how to draw them on.
• After chemo and surgery, I started my recovery, I exercised very slowly. Even 15-20 minutes of chair yoga or “chair dancing” would tire me out for several days. I had a walking video set and I would do 5-10 minutes of the one-mile walks. I also had old Richard Simmons videos that I could to for 15-20 minutes. If I overdid, I would pay for several days after.
• In the journals that I shared with friends, I kept a running dialogue of how I was feeling and what I was able to do. Reading these back later helped me to see how much progress I had really made. In one of the books I read, the author called her period of treatment her “floating year.” My first year went by faster than I could imagine.
• I took one day at a time. I don’t know what chemo does to the inside of the body, but I do know that it strips away everything that is not important from your outer daily life. I spent days and days and days just sitting. That was all I could do. Some days I could accomplish small tasks, then after I would sit some more. I stopped worrying about what wasn’t getting done. I stopped worrying about the things I couldn’t do. I released oh-so-many things I had once thought important. In the end, my only job was to get well.
Body and Mind
• I followed and used my own methods as detailed in my books Transformational Healing and Marvelous Messages. I learned a lot about myself, what matters to me, and what’s really important in my life. I continue working on some life shifts that surfaced during this time. (This will probably continue throughout my life.) I never know how my own sessions will turn out as my method is not so much a cure as it is deep exploration of self. The results that come about are based on whether or not the prescribed actions are taken (or not). When taken, they typically lead to major life shifts.
• I utilized statements from Access Consciousness that I learned from reading Dan Heer’s Being You, Changing the World, and by working with Mande White-Pearl and her videos. (I’ve read several Gary Douglas' books as well.) Some of the statements I often used on myself during my diagnosis and treatment period were, “How does it get any better than this?” “What is right about this situation I’m not seeing?” and “Everything is the opposite of what it appears to be. Nothing is the opposite that it appears to be.” (The latter was particularly helpful while undergoing tests and being fearful of the outcome.)
• I did not do any research on my cancer and talked to very few people about their experiences during my treatment. (My husband did some research on my behalf.) I purposely shielded myself as much as possible from knowing about side effects and outcomes so that I didn’t feed my mind with fearful thoughts. I asked my doctors not to tell me my staging. (I still don’t know what it was, but my husband does.) I have since joined (and left) several online breast cancer support groups. Hearing all their stories, I’m glad I didn’t hear them before having chemo. Instead, I kept my mind clear of fear and focused on positive outcomes. I had very few side effects.
• There were times when I didn’t know what to do, particularly if I were experiencing pain or fear. I would then place my hand on my body or over my heart and repeat a popular Louise Hay saying, “I am safe and all is well.” Another saying I used was from ho’oponopono—“I’m sorry, please forgive me, thank you, I love you.” Author-medium Suzanne Geiseman, taught “Forgive me for forgetting I am love...” (although I changed it and said, “Forgive me for forgetting I am love and I am loved”). Sometimes negative scenarios would come into my mind. I would say, “No, I reject that!” even if it was something unlikely or ridiculous. Then I would change my thoughts to something positive. If all else failed, I just told my body, “We’ll get through this.”
• For the most part, my brain never accepted the fact that I had cancer. I knew I had tested positive for it, knew I was being treated for it, I knew I had surgery because of it but something in my brain never comprehended it. When I learned I was in remission, I didn’t feel any real emotion about it because, in my mind, I’d always been cancer free. This wasn’t something I pretended or tried to create. I didn’t make up affirmations about being healed. I just was.
• I ate a tablespoon of raw honey every morning at the beginning of my chemo treatments to help protect my mouth and gums. This worked for me, though there are no guarantees. I also used colloidal silver and Frankincense essential oil.
• I worked with an acupuncturist.
• I had a private session with friend and author Alaya DeNoyelles. DeNoyelles method and book, Acupresence, utilizes acupressure with empowering invocations. She also combines Acupresence with popular methods from Gene Keys, IChing, and Human Design. DeNoyelles guided me to specific points on my body to call upon for healing.
• I also utilized a few techniques from my Eden Energy Medicine training with Donna Eden and David Feinstein.
Remember that 1 in 8 women will be diagnosed with Breast Cancer. Think about 8 women you know, now 8 more, then 8 more. . . 1 in 8 will be diagnosed. Early detection is key. Only 15% have a family history (a very small percentage)! More and more, younger women are being diagnosed. Linked by Pink is an Erie, PA area organization that specifically helps younger women who are diagnosed with breast cancer.
If you're a BC survivor, I'm sure you have tips too. Feel free to add them in the comments.
*However, some of the links above are affiliate links, i.e, I am an Amazon Associate.