Navigating Breast Cancer
WELCOME TO OUR COMMUNITY OF SUPPORT!
Those words, "You have breast cancer" offers an instantaneous initiation into a strong sisterhood of FIVE MILLION breast cancer survivors throughout the world. We're so glad that you've found your way to our website, where we offer support, HOPE, inspiration and insight into navigating the storm of breast cancer.
We welcome you to navigate our blog which has been categorized into treatment phases of breast cancer, life lessons that come from that journey and the sometimes difficult challenge of finding a "new normal" after treatment ends. We hold a firm belief that everyone has the right to experience breast cancer in their own way. That being said, this website takes a positive approach to all aspects of life, including a breast cancer diagnosis.
We like to refer to breast cancer as one of many storms that we will face in life. Storms often blow into our life unexpectedly, but most of the time, they blow right back out. The darkest days of the storm are frightening, overwhelming and too much to bear alone.
But even on those darkest days, we've discovered that there are rainbows just waiting to be discovered. We challenge you to find your own rainbows through the storm and share them with thousands of breast cancer survivors throughout the world on our Facebook page and Twitter.
We invite you to find hope during your journey through breast cancer in the new release, Celebrating Life Decades after Breast Cancer. You’ll meet forty women who are celebrating life twenty, thirty, even fifty years after being diagnosed with breast cancer. Learn how you can purchase an autographed copy and meet the inspiring survivors from the book during our worldwide book tour by clicking here.
We welcome you to peruse the website and to join our community for weekly inspiration, HOPE and exclusive updates. Submit your email address through the sign-up link in the right sidebar for access to "Tips for Navigating Breast Cancer".
Everything changes when you hear those words, “You have breast cancer”. While you may have felt very alone in that moment, you were instantly initiated into a sisterhood of five million breast cancer survivors throughout the world. While none of us chose this path, our bond of support is strong and unwavering.
The initial onslaught of foreign oncology terminology, blood work and scans is overwhelming. Sleepless nights intensify a plethora of mixed emotions.
You may still be in a state of shock when treatment begins. Surgery and chemotherapy is often scheduled within days or weeks of diagnosis. Your world is turned upside down but as with any crisis, you will find a “new normal” with time.
Please know that there is no right or wrong way to feel or experience breast cancer. You have the right to experience this journey in your own way.
Gain insight and HOPE from women who have survived breast cancer for decades (twenty to fifty years) by checking out our new release “Celebrating Life Decades after Breast Cancer”. We encourage you to read our blog and join our online book club for support and insight.
Join thousands of breast cancer survivors throughout the world by liking our Facebook page. The heartwarming support from others who have experienced this journey before you will calm your fears. You can pay it forward by offering insight to those who are diagnosed after you.
HELPFUL TIPS FOR THE BREAST CANCER JOURNEY
We want to share a few tips that may be helpful for your journey through breast cancer.
Find a trusted person in your life with whom you can be completely honest and share your emotions. You will need an outlet for the every day process of this, but you also need to be able to express your deepest fears and emotions. This may be a spouse, family member, best friend, therapist or fellow survivor. You can reach out to fellow breast cancer survivors through Navigating Breast Cancer Facebook page. Keeping your fears and emotions bottled up inside will not help you heal emotionally, so please talk to someone.
"The journey through storm can be dark at times but your rainbows are just waiting to be discovered."
~Beverly McKee, MSW, LCSW
Don't suffer in silence. The side effects from chemo vary greatly from one person to another. Oncologists tend to treat the side effects that most people experience with the plan to address additional problems as they arise. They rely on us to tell them if we have other side effects so don't suffer in silence. Call your oncology office and ask for help.
Be careful with internet research. Many oncologists recommend breastcancer.org and cancer.org which is are great resources. The discussion boards can be very informational, but a little goes a long way. Also keep in mind that the world of breast cancer research changes every day. If you are looking at any information more than a year old, it is likely outdated.
Be patient with your loved ones. Being diagnosed with breast cancer impacts all of the people in your life. Everyone will struggle with the same range of emotions that you are experiencing, but they will also feel helpless. Many of your loved ones will be supportive, but others may say things that are thoughtless...maybe even offensive. Many of us have comforted loved ones as they cried. Other times, we have to bite our tongue when others feel the need to share stories with less than positive outcomes. Try to keep in mind that people do not know what to say and they are struggling too.
Consider an online blog to keep friends and family updated. Many women use caringbridge.org because it’s easier to write a quick blog update rather than answering everyone’s calls and repeating the entire story. Writing may also become an emotional outlet for you.
Ask for and accept help. Women tend to be caregivers. We take care of everyone else in our lives and it’s not always easy to accept help. Many of us have discovered that allowing others to help is truly a gift. It allows us to focus on healing while allowing our loved ones to do something to help. Ask a friend to set up a care calendar for help with meals and be open with your specific needs. For example, ask a friend to take your child to practice or cut your lawn. People want to help and everyone feels better when you give them the privilege of helping you during your journey. Soon enough, you will be back on your feet and ready to give back to someone else.
You are NOT alone in your journey. There are many resources that you can access through your oncology office. You can join breast cancer survivors from around the world on our Navigating Breast Cancer Facebook page. We share stories of hope and inspiration while supporting one another from all over the world.
Remember that the journey through breast cancer is harder than you want it to be but easier than you fear it to be. You can do it! The good days will outnumber the bad. The worst moments will pass. You may be surprised how many rainbows you find during the storm of breast cancer if you’ll just look hard enough!
INTIMACY AFTER BREAST CANCER
Finding a “new normal” after breast cancer is not easy, but most of us are completely unprepared for the challenges of intimacy after a breast cancer diagnosis.
Fears of rejection, insecurity about our body image and physical pain make us want to put on our granny panties and hide under the blankets from our partner. Add in the changes in hormones: early menopause from chemotherapy, hormone therapy or a hysterectomy and any memory of a lascivious libido becomes a distant memory.
There is HOPE...even for those who have the libido of a wooden table.
Sadly, this is a subject that is rarely discussed due to its personal nature. In an attempt to break the silence, we talked to breast cancer survivors throughout the world about their experiences with intimacy after breast cancer.
They shared similar stories about their struggles and were desperate for answers. You will find their quotes throughout this article, left anonymous for the sake of privacy.
Some women suffer in silence while others have hit resistance when asking their doctors for help.
We need to remember that oncologists are in the business of saving our lives by extinguishing cancer. Most of us will be eternally grateful to thier oncology teams for stomping out cancer, but few doctors mention that our love lives might be impacted by our diagnosis and treatment. Determined to learn more, we sought out an expert in the field.
Tamara Williams-Reding, M.Ed, is a licensed professional counselor specializing in psycho-oncology. She works in an oncology office with a variety of cancer patients. A breast cancer survivor herself, she began to research intimacy after breast cancer following her own struggles.
“Breast cancer had taken so much from me. I refused to let it take away my sex life with my husband. I knew that I wasn’t alone in this struggle after talking to other survivors in my practice. I began speaking to groups about this subject so that other survivors know that they are not alone and to offer solutions to women who are struggling.”
10 ways to help a loved one coping with breast cancer
Everyone has been in this situation: a friend shares difficult news and you respond by asking: “How can I help?” You mean well but rarely follow through on those words. You brainstorm ideas to help then get distracted by life until you see that person later. Overcome with guilt. You make that same offer again.
You may be surprised to learn that the age old question, “How can I help?” is not always the best approach to making a difference.
Why? First of all, we’re often exhausted from coping with the crisis at hand. We don’t have the time or energy to figure out how you can help. Please keep in mind that we hear those words from everyone. It’s such a common response and we’re not really sure if you truly want to help or if you are saying it to be nice. It’s nothing personal. We are just trying to keep our head above water in overwhelming circumstances and need to keep our focus on staying afloat.
So what can you do to really help a friend or family member going through a life crisis? DO something, don’t just offer. Here are ten tips to get you started:
Help with a specific task
Think about what your friend will NOT be able to do during treatment: walk the dog, decorate for Christmas, mow the lawn, pick up groceries, take out the trash, etc. Enlist the help of others, brainstorm ideas and then assign tasks to anyone who is willing to help.
Once you have a plan, offer to help your friend in crisis in a way that they can’t refuse, for example: “Our sons have basketball practice together on Tuesday. I would love to pick him up from school and bring him home after practice.” Or "I'm going to the grocery store, what can I pick up for you?"
Small gestures often make the biggest difference!
Going through a crisis is tough and all consuming. Planning and preparing meals can be overwhelming during this time. Offer to set up a Care Calendar which can be found by clicking here.
Whether you use Care Calendar or simply set up a rotation of meal delivery among friends, be sure to set up guidelines. Assign days and coordinate different types of dishes to prevent four lasagnas being delivered on the same day. Your loved one may need to rest so don't expect them to play hostess. Ask them to put a cooler on the front porch so meals can be dropped off without ringing the doorbell. Be sure to ask about food allergies and preferences so the entire family can enjoy the meal.
Offer transportation to doctor’s appointments
There is no doubt that having two sets of ears is vital to retaining information during doctor’s visits. Offer to take notes during the doctor’s visit if they are comfortable having you in the room. If they want privacy, give them a mini recorder for the visits, so they can listen to their doctor’s words at their convenience.
Your support during the drive to and from the doctor’s office is something your friend will not forget. Let your friend process what they have heard from their doctor and listen to their concerns.
Offer to set up cleaning services
House cleaning and laundry is an ongoing task for all of us during normal life. Coping with a crisis can make these tasks monumental and overwhelming.
Offer to set up a weekly cleaning/laundry rotation with close friends. Not close enough to offer to clean? Purchase a gift certificate to a local cleaning service.
If your friend is coping with breast cancer, you can offer to set up “Cleaning for a Reason” which offers four free house cleanings to breast cancer patients going through treatment by clicking here.
Offer to visit and truly listen
Some people may enjoy a visit at home while others may prefer to go out for lunch. Let them take the lead during conversation. If they want to discuss the details of the crisis for an hour, listen...just listen. If that person wants to talk about anything but the crisis, discuss your common interests. Don’t offer advice unless it is requested and never discuss a story with a negative outcome. Get more tips about what NOT to say to someone going through a crisis by clicking here.
Don’t overstay your welcome. Watch for cues that your friend is getting tired or distracted, give them a hug and leave them to rest.
Send a card or gift
A card or gift is an easy way to let someone know that you are thinking about them. Look for cards with an inspirational or uplifting message and let your friend know you are thinking about them.
A cute box to keep the cards organized is great gift idea. Once the crisis has calmed, your loved one can keep the box tucked away until they want a reminder of how much they are loved and how they have come.
Help with updates
The barrage of phone calls, texts and emails is often overwhelming as we move through a crisis. Everyone wants to stay updated but it can be exhausting to tell our story over and over.
Offer to call friends and family or offer to set up a Caring Bridge account for your friend and then help keep it updated. Caring Bridge is an online service that you can share information with friends and family who have access to the internet. Click here for the Caring Bridge website.
Send A GIFT CARD TO A LOCAL RESTAURANT
This is a perfect way to help if you are too busy, too far away or don’t know the person well. Find a restaurant that offers pick up and dine in and appeals to all palates. A gift card can be used at the recipient’s convenience with the option to pick up and eat at home or get out of the house for the evening.
You can order one online and have it delivered. It’s easy, inexpensive, helpful and universal.
Stay in touch after the crisis appears to be over
Everyone tends to rally together in the beginning of a crisis, which is wonderful. Unfortunately, as life moves on for everyone else, we are still coping with our struggles. It's the months and even year after the crisis ends that we have a difficult time finding a "new normal".
Mark your calendar to check in with your friend and remind others to stay in touch over the coming months.
Remember... there are no magic words
This is difficult for many of us to accept, but essential to being truly supportive. There are no magic words that will fix the situation, so take that pressure off of yourself.
Helping in the way that makes sense to you and being there to support your loved one is the best thing you can do. The best advice to anyone who wants to make a difference for a loved one going through a crisis: JUST DO IT! Don’t wait... make them an offer they can’t refuse and make it happen. You will help that person feel loved and you will have the satisfaction of knowing you have a made a difference for your friend during a challenging time.
Thanks to everyone who has dedicated their career to saving lives as part of an oncology team! We wanted to share the top ten things that breast cancer patients would like you to know from both a patient standpoint and a therapist’s insight.
- We know you’re super busy and trying to meet your expectations for the number of patients seen every day, but our five minutes with you means everything to us. We wait with bated breath for our limited time with you. Please take a moment to give us your full attention. Step away from the computer and really listen to our concerns. We are counting on you to save our lives and we need to know you really care.
- Many of us are new to the whole oncology world. We don’t understand the terminology and we are easily overwhelmed. Sometimes, our fear muddled brains cannot process our discussion. Encourage us to have a dedicated notebook for our appointments with you. Remind us to write down our questions prior to seeing you and to take notes while you give us answers and further instructions. It will help prevent miscommunication and unnecessary calls to your nursing staff if we document what you tell us.
- We understand that statistics are important for treatment planning but please don’t use them to crush our hope. Someone is always that one in ten or one in one hundred…it just might be us, so please consider how and when to share statistics with us.
- While we may be one of twenty patients that you see today, please remember that we are individual people. We each have our own fears, hopes, families and lifestyles. Try to be sensitive to our individual differences and needs.
- Cancer is our presenting problem in your office, but we are still a whole person. We respect your opinion and may ask you about other aspects of our health such as diet, exercise and complementary medicine. Please try to balance our physical and emotional needs while guiding us through this frightening time.
- We view you as the supreme expert when it comes to our cancer diagnosis, treatment and potential outcomes. Please remember that the power of perspective can make or break us emotionally. We base our perspective on your words, so please choose them wisely and give us hope.
- You have seen thousands of patients but each patient has insight into their own body. Side effects vary from person to person so encourage us to become a part of your treatment team. Remind us that it’s okay to call with concerns that might be easily addressed before our next visit weeks in the future.
- Your team offers us guidance and treatment on our journey through cancer, but many of us need more than you can offer. Encourage us to find support through a support group, friends who have been through cancer or online support. Remind us that no one size fits all and we may need to try a few types of support systems before we find one that works for us.
- We all celebrate when treatment is over, but many of us struggle after that last radiation or chemotherapy. We have grown used to your team examining us and supporting us for many months and now we are suddenly on our own. Depression levels tend to spike within two years after treatment ends because the world expects us to be fine, but we often feel lost and unsure how to move past cancer. Help prepare us for this possibility and encourage us to seek support from others for this often unanticipated part of the journey.
- While you may be our life saving hero, you are a person too. This is a tough field and the hard days will take their toll. Please remember to take care of you so that you can remain stoic for us. The same is true for your team. Vacation time, work/home balance, healthy lifestyle choices and mental health days are vital to everyone’s well-being.
Beverly McKee, MSW, LCSW is a licensed mental health therapist with a long history of educating the medical professional about mental health issues. A Stage III invasive lobular carcinoma diagnosis in the fall of 2012 gave her unique insight into working with oncology teams both as a patient and an advocate for her worldwide following on social media. She is available to speak to oncology teams and residents at medical conferences and for in office lunch and learns. Provide your oncology team/residents with a unique insight into cancer treatment from the perspective of a patient and learn more about the emotional impact of a cancer diagnosis by requesting a presentation today.
Click here to contact Beverly directly.