You’ve Got Mail
Mary Ellen is a breast cancer survivor and a committed Foundation volunteer. Finding that she was often asked for advice from newly diagnosed friends, Mary Ellen crafted a comprehensive email filled with advice and tips.
She recommends sending this by email so it’s a resource to refer to when needed. And of course, personalize it for your friend or loved one!
Dear ____________,
I’m so, so sad for your diagnosis! YOU’VE GOT THIS, and I’m here every step of the way for you. It is a terrifying process but know that you are assembling an incredible medical team that will lead you through it. You are also not alone in this.
If you have not set an oncologist appointment, you’ll want to get an appointment on the books. My oncologist is brilliant, kind, compassionate and extremely current on new trials, drugs, diet, holistic therapies. I consider her my primary doctor as well as a friend. Normally, you’ll meet with your oncologist about six weeks out from surgery.
Mastectomy Helpful Hints
Front button pajama tops are essential.
Have a friend change your sheets while you are in surgery so you come home to a clean bed.
An assortment of pillows with soft and firm thickness help to get comfortable during recovery. Your arms/back may need different support. If you are a stomach sleeper, it will feel like you will never sleep that way again, but trust me, you will.
A fleece jacket is a good idea. After mastectomy and possibly after lumpectomy, you will have drains in and I found jackets (and shirts) that are front zip are essential. You can’t lift your arms for awhile to get something over your head. If the jackets have the inner pockets, the drains can go in there and don’t have to be pinned to the shirt.
Be sure to ask whether you need to be putting ointment on your incisions. A friend of mine was not told post op to put eucerin on her breasts and the skin started to become necrotic because it was drying out and not healing properly.
Chemotherapy and Radiation Helpful Hints
Chemo can take several hours. Friends always wanted to sit with me but it made me sleepy and I felt funny with them watching me sleep and felt I had to fight to stay awake to talk to them. I finally would have them just drop me off and pick me up after treatment bc that few hours of sleep was critical to me. I took a steroid the day before, day of, and day after treatment and was wired from it and couldn’t sleep.
I was always cold because I lost weight and the chemo zaps your energy. Radiation will zap your energy as well. It gets progressively worse as it seems to be cumulative. Fuzzy socks and blankets were some of the best things my sister gave me.
My skin got very dry and itchy. Maybe it was a drug reaction but a good lotion is helpful — with no odor if possible because nausea can be a side effect and adding extra scents could add to it. One I highly recommend is Aloe Moist. You can order it online from aloemoistorganics.com. It is really clean and works well on scars and for daily moisturizing. I still use it now as a daily body moisturizer.
A chemo side effect I had was a terrible metallic taste for two weeks after chemo (I had treatments every three weeks). Metal water bottle or utensils seemed to make it worse. Use plastic cutlery and cups or glass drink ware if taste is affected. Watermelon and sweet potatoes were foods I could eat and lemon/mint gum helped with the metallic taste too. Some people recommend ginger as well.
I had to not eat anything with tomatoes because they tasted awful. Many foods did. Probably because of the acidity. I found hydrating helps flush out the chemo drugs. Drink lots of water!
Do not eat foods you really love because you may later have an aversion to them. I used to love hummus now it reminds me of treatment. I also have an aversion to ivory bath soap now because the smell is associated with sickness for me.
I did not have radiation because with a double mastectomy, there is nothing left to irradiate. I have friends who have had radiation that I can refer you to if you need info on it.
Hair Loss Helpful Tips
Most chemo will make you lose your hair, maybe shop for a wig now. Cancer services of northern Indiana is an incredible place. You can get two free wigs from a large selection. They also have hats and scarves etc. and lots of literature too.
Cold capping is a newer treatment that was not used when I had treatment. It has proven to be very successful in helping you keep your hair. I have some friends who used cold capping and can tell you more about their experience with it.
Cancer services has easy yoga classes and massages for cancer patients and their care givers. It is a trying time most certainly for you, but also for your family and friends.
The most important thing I want to let you know is you can do this.
Some days are hell but it’s like labor stories — everyone tells their worst experience. It isn’t that bad many days, and you need to listen to your body, especially if you need more rest. I continually told that to a friend as she has had countless radiation treatments and was so worn down. She thanked me for the advice to just sleep all day, if needed, and the affirmation that it was ok to do so was a huge help to her.
I also found exercising, even though I was tired, really made me feel better. Short walks or a quick spin on the bike kept me going and I think was a huge help in my recovery. I am a huge proponent of rebounding (mini trampoline) exercise. It is the only exercise that flushes out the lymph system. Exercise does not need to strenuous on it and can be a simple, gentle health bounce to stimulate lymph clearing. Albert Carter wrote a wonderful book on the health benefits of it in “The Joy of Rebounding”.
I had so many friends and family offer support, however I was very particular who visited me post op because I needed rest. I kept visitors to a bare minimum until I felt better.
Eating Helpful Tips
Try to eat plant based, clean eating.
Stay away from fish as the mercury and chemicals are hard to clear from your system and you want your liver to be as healthy as possible.
Vitamin C is good.
No sugar, processed foods, or junk food.
Vegetables are good to eat, raw or lightly steamed. In particular, cruciferous veggies have healing powers — broccoli, cauliflower, arugula, bok choy, brussel sprouts, and cabbage. Mushrooms have awesome healing benefits too!
Oatmeal, sweet potatoes, nuts (especially Brazil nuts) are great.
Berries, especially blueberries, have lots of antioxidants.
Filtered water.
Non GMO and organic products.
The book I recommended is Michael Gregor’s ‘How Not to Die’. I’m pretty sure Costco has it, but if you want it sooner, you can read it online.
Your team (medical, family and friends) is your core unit.There are so many types of breast cancer and even more treatment options. Because of the research breakthroughs that are being made, your course of treatment can be very different from others. Trust your team. They are experts and are focused on your healing.
However, that does not mean to not ask questions and to voice your concerns. At one point I became allergic to tamoxifen and my lips were swelling. My doctor immediately put me on a different estrogen blocker drug. I felt like I couldn’t function from it because of the deep muscle aches it caused. My quality of day to day functioning was compromised, so my team discussed alternative drugs to achieve the desired medical goals yet allowed me to live an active lifestyle. So, trust your medical experts but remember you are a team working together to find the best solutions for your situation.
Also, and very importantly, you need to allow yourself to rest and heal. It was so hard for me, with a type A personality to slow down and let someone else care for me. Your body will tell you when you need to rest or if something is not right. Listen to it.. there will be days of exhaustion and pain so rest and let your capable family and friends care for you. You find that the important things in your world that need to get done, will get done and the little stuff no longer matters. For the next year, your health is the priority.
That was a log of info! I’d recommend keeping notes and questions in a notebook because it all gets overwhelming and hard to keep everything straight. Take the notebook to every appointment so you remember the things you want to ask your medical team. Also, always have someone go to the appointments with you. Or record the appointment if ok with the practitioner. A second set of ears is critical because the process, terminology and new concepts are overwhelming and it helps to be able to revisit conversations for clarification.
My heart goes out to you. It takes a village to get through it. Remember, you are not alone!
XOXO,
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