How to Lend a Helping Hand – Tips for Family and Friends
By Barbara Cervoni, LMSW, ACSW
Director of Services and Communication
If you have a loved one with breast or ovarian cancer, chances are you want to be helpful and supportive, to somehow make things easier. But, like most people, you may be at a loss figuring out what to say or what to do.
Support Connection’s Peer Counselors have some ideas for you, based on their work with many women who’ve shared the simple things that eased their trip along the long path from diagnosis, through treatment, recovery and beyond.
Stay In Touch
- Check in regularly. Just say hi and ask how she’s doing. It tells her you’re thinking about her and that you care. You don’t always need to “do” something or “say” something to be helpful. Being consistently present is what matters.
- Cards, notes, emails – these are all great ways to let her know she’s in your thoughts. They also become lasting messages of love and reassurance she can re-read whenever she needs a boost.
- Give small gifts that offer comfort and make her smile. Lotion… a pair of fuzzy socks… warm pj’s or a robe… light reading material to take her mind off what she’s going through.
- Say three simple words: “I love you.” The most healing words in the universe.
- Keep the communication going. Don’t stop because treatment ends. That’s when she can finally step off the roller coaster she’s been on, look back at where she’s been, and wonder where she’s headed next. She still needs your support.
Be There
- Be a calm presence, accepting any emotions or fears she needs to express. That can be tough when you have your own fears and emotions.
- Allow her to be human. Most people try their hardest to be strong. It’s good to acknowledge her strength, but no one can be strong all the time. Even Superman has to be Clark Kent sometimes. Give her “permission” to take off her cape.
- When she’s up for it, visit with her. Thirty minutes over a cup of tea… an outing for lunch or a movie… anything that takes her away from cancer for a bit is invaluable.
- Remember to talk about the everyday things going on in your lives. Don’t be afraid to laugh – laughter really is wonderful medicine.
Help Out
- Offer to go with her to appointments. Dealing with cancer and all the decisions and information is overwhelming and exhausting. Offer to: go along to take notes…. sit with her while she waits … stay with her during a test or chemo.
- Don’t wait for her to ask for help, just do it! It’s really hard to ask and she may not have the energy to do so. Here are some ideas:
- Call to say you’re going to bring over a meal. Tell her what you have in mind and ask if there’s something she’d prefer instead.
- Mention you’re going to the grocery store. Ask what’s on her shopping list and offer to pick it up.
- Let her know when you’re available. Ask what she needs help with during that time.
- If she has children, anything you can do to keep life as normal as possible for her children will help her feel better. So, take them for playdates, drive them to activities, etc.
Just Listen
- The musician Alfred Brendel said: “The word ‘listen’ contains the same letters as the word ‘silent’.” It’s normal to want to solve or fix things, to find the right thing to say. Try to silence your mind and just be in the moment with her.
- Avoid saying things like “You’ll be fine” or “It’s all behind you now.” It’s never really over. Instead, ask how she’s feeling. When she tells you, offer compassion and support.
- Stay away from offering advice. She’s already getting instructions from all directions. Even if you’ve been through a similar experience, remember, everyone is different.
- Let her set the boundaries. There may be times when she doesn’t want to talk, or things she feels are too private. You’ll hear this when you listen.
Communicating With Your Doctor
Taking on the role of being a patient can be complex and anxiety provoking. However, there are things you can do to take charge of your diagnosis, treatment and life while living with cancer. Learning to effectively communicate with your doctor is a perfect example.
Remember: You and your doctor are partners in your care. Your doctor is the expert on your disease, but you are the expert on you. Your responsibility is to make sure you’re communicating as openly and clearly as possible.
Doctors care about you and your needs, but they may not pick up on all you’re going through if you don’t tell them. By taking proactive steps to enhance the lines of communication, you can have a real positive impact on your medical care as well as your overall feeling of confidence.
The Peer Counselors on our staff have some advice and suggestions to help you communicate with your doctor:
Don’t Be Afraid To Share
It isn’t easy to share openly. Sharing our fears may make us feel vulnerable, when we think we’re “supposed” to be stoic or strong. We may think our concerns seem extreme, or feel embarrassed to share. It’s only human.
We also might hesitate to share if we compare ourselves to others. Sitting in the waiting room, it’s easy to think there are others who are sicker than us and need the doctor’s time more than we do. We may fall into the trap of thinking our problems are minor or unimportant compared to others.
Always remember: You are the doctor’s most important patient when you’re with them. If you hold back, you’re doing yourself and your doctor a huge disservice. It’s your job to make yourself number one, and share all of your concerns and needs. This gives your doctor the chance to meet those needs, and to support you in your most vulnerable moments.
What Your Doctor Needs To Know
All about you: Help your doctor understand who you are as a person. It takes the focus off the disease and puts the focus on you. Tell your doctor about your work and home life…. your family… your support system …. other stresses in your life…. your interests and hobbies…. whether you’re a caregiver for someone else…. what quality of life means to you. This will help you and your doctor take steps to keep your life as normal as possible.
Your fears: Let your doctor know what you’re afraid of: hair loss, getting sick, side effects…. whatever it is you’re worried about. Do you have fears connected to your “history” with cancer, such as fears stemming from what you’ve seen other people go through, or people you’ve lost to cancer? Your doctor needs to know this too, in order to address and alleviate all of your fears.
Your pain: Most of us struggle with letting our doctors know how much pain we’re in. As a society, we tend to minimize pain, or tough it out. Doctors want you to communicate, in a timely manner, your level of pain or difficulty so they can assess your needs and help you feel better.
Communication Strategies and Tips
Prepare your thoughts: Write your questions down ahead of time and bring them to your appointment. This will remove the pressure of trying to remember everything you want to ask.
Request the time you need: If you know you’ll need more time with your doctor than usual, mention this when you call the office to make your appointment, and ask them to schedule a longer appointment. When you arrive for your appointment, let your doctor know too. That way, your doctor can make time for you and give you their full attention.
Ask for details: Request copies of all your reports, test results and treatment plans. Ask your doctor to explain them to you. The more you understand about your illness, the more in control and confident you will feel.
Take notes: It is perfectly okay, and a good idea, to take notes while you’re talking with your doctor. This way, you’ll have your notes to refer to later on and won’t have to rely on memory. It can also be helpful to bring someone with you to take notes, so you can concentrate on the conversation.
Follow up later if you need to: Sometimes you can’t get all your questions answered at once. If your doctor must leave before you’ve had time to discuss everything you wanted to cover, make a plan to continue the conversation: schedule a phone call, ask about email, etc. If you leave the office and later realize you missed a question, or didn’t let your doctor know how you’re really feeling, that’s okay too. Call the office to speak further with the doctor or make another appointment.
Learn the system: Find out the best contact information for your doctor and his/her staff, both during and outside of office hours. Make sure you know how to reach your doctor should you have a question or emergency that cannot wait. Confirm the office’s policy about returning calls so you know what to expect.
Find tools that work for you: Do you prefer written notes? Carry a small notebook to all of your appointments. Use it to write your questions, your doctor’s answers, any other notes from the appointment. Do you carry your smartphone or tablet wherever you go? There are many great note-taking apps that allow you to have questions and answers at your fingertips.
Need some more help?
Connect with one of our Peer Counselors. They’ll be happy to help you think through your questions, discuss your fears or concerns, and offer individualized support that will enable you to communicate with confidence. Call toll-free 800-532-4290, or click here to send an email.
Resources to Help You Find Your Way
By Barbara Cervoni, LMSW, ACSW
Director of Services and Communication
Getting though cancer diagnosis, treatment, recovery and beyond is a challenging path to travel. It has an impact on every aspect of your life, as well as the lives of your family and loved ones. We encourage you to use every tool in your toolbox to help you find your way, with as much support as possible.
That’s why we maintain an extensive directory of community resources that offer an incredible range of services and programs, addressing the many and varied needs that occur when dealing with cancer.
Our resource directory is a comprehensive list that the Peer Counselors on our staff refer to when people call or email us for help and guidance. Our Peer Counselors are also the ones who compile and maintain this list. Because they talk with cancer survivors every day throughout the year, they understand what you need. And they know what to look for when evaluating community services.
To give you an idea of the types of valuable resources we know about, we’ve put together a brief sample in the list below. But, our list is ever-growing, so remember:
All you need to do is reach out to one of our Peer Counselors. Tell them about your needs or concerns, and they’ll help you find the tools that are just right for you.
A small sample of the types of resources we can tell you about or help you to find:
Retreats and respite travel opportunities for cancer survivors
Info on nutrition and exercise
Home care services
Support and programs for caregivers and families
Special programs and camps for children
Where to obtain wigs, prosthetics, specialty garments
How to find information about clinical trials, genetics, lymphedema, fertility concerns
Complementary care such as acupuncture, massage, yoga
Questions you can ask your doctor
Assistance in identifying resources and services that are local to you
To learn more about resources that are available, call one of our Peer Counselors toll-free at 800-532-4290. Or send an email using this link.
Open Discussions: A Place to Feel Less Alone
Why Open Discussions?
Why do we have Open Discussions on specific topics related to a cancer diagnosis? It’s because, as any of us who’ve been diagnosed knows and understands, there is often “fallout” from a diagnosis and treatment.
We all feel like deer in a headlight after hearing the words “you have cancer.” We do everything we can to learn more, by researching what the doctors said, at least all we could hear and absorb. We ask intelligent questions, seek second opinions.
But often we discover later there are things we wish we’d asked but didn’t know. Or, sometimes new issues and questions crop up unexpectedly.
Open Discussions are a place where we can get together and discuss these things, to learn from one another and feel less alone.
What do Open Discussions address?
In our Open Discussions, we often talk about things such as side effects like lymphedema, chemo brain, intimacy issues, fertility issues, joint pain, peripheral neuropathy. There are so many reasons that cancer survivors can experience this type of “fallout”: surgery, certain types of chemo, a disconnect in communication with the medical community, changes in the world of health care. The fallout often leads to real challenges: Younger woman can no longer have children. Lymphedema from lymph node removal can in some cases be debilitating. The same is true for peripheral neuropathy, a side effect of certain chemotherapies. Loss of memory from “chemo brain” becomes frustrating. Changes in our bodies from treatments and surgeries can impact libido and affect intimacy.
Open Discussions can also address specific situations. For example, we have discussions for men whose spouse or partner has gone through cancer, and for women who were diagnosed at a young age.
Of course, none of these things happen to everyone. But they do happen. So, we invite people who are experiencing specific issues to take part in a discussion to share information, resources, and coping strategies.
How do Open Discussions work?
Our Open Discussions are not educational forums with presentations by doctors or other health care professionals. They’re a place where people come together to discuss a particular challenge they have in common as a result of their cancer journey.
Participants share their concerns and experiences, taking comfort from the fact that they’re in the company of others who understand because they’ve been through it too. A peer facilitator is always there to lead the conversation.
By talking together we can support one another, learn from one another, and become our own best advocates.
How can I learn more?
To learn about any upcoming Open Discussions currently on our calendar, and to learn how to register, visit our Open Discussions page.
Or call and ask to speak with one of our Peer Counselors: 914-962-6402 or toll-free: 800-532-4290.
You can also send an email with with any questions, or with a suggestion for a discussion topic. Use this form to email our Peer Counselors
Get Educated About Ovarian Cancer
(Originally published by Lohud.com, 9/25/15. Updated 9/3/20)
By Barbara Cervoni, Support Connection, Inc.
In 1998, when she was 43, Debra Paget called her doctor because she felt some strange things were happening with her body. She said she was having some spotting when she shouldn’t have been.
After her diagnosis, Debra made a point of learning more about ovarian cancer. She was surprised to discover she’d had some warning signs that she missed: stomach and appetite problems, bloating, clothes that no longer fit. Common, seemingly benign things that most women experience at one time or another. Debra says:
“At first, we thought it was perimenopause, but when it got worse, I called again and went in to see her,” Debra said. Within days, Debra was in surgery, and diagnosed with ovarian cancer.
Fortunately Debra’s ovarian cancer was still caught at a very early stage and now, 22 years later, she leads a healthy and active life. But for many women, the symptoms of ovarian cancer slip by unnoticed. When that happens, the outcome can be very different.
According to the American Cancer Society, when ovarian cancer is found early, about 94% of women live longer than five years after diagnosis. Unfortunately, only about 20% of ovarian cancers are found at an early stage. This is significant because ovarian cancer ranks fifth in cancer deaths among women, and accounts for more deaths than any other cancer of the female reproductive system. And it’s estimated that about 21,750 new cases of ovarian cancer will be diagnosed annually in the U.S. in 2020, although the vast majority are diagnosed at a later stage, when treatment is more challenging.
Why is early detection of ovarian cancer so difficult? To start, there’s no screening test for the disease. The Pap test women undergo with routine gynecological exams only screens for cervical cancer. And as Debra learned, the symptoms that do occur are often mistaken (by women and even by doctors) for other, less serious ailments.
The key to early diagnosis of ovarian cancer is learning the symptoms and listening carefully to your body. The National Ovarian Cancer Coalition advises women to watch for the following potential signs, and if they persist for more than two weeks, see a physician:
- Bloating
- Pelvic or abdominal pain
- Trouble eating or feeling full quickly
- Feeling the need to urinate urgently or often.
Other possible symptoms include: fatigue; upset stomach or heartburn; back pain; pain during sex; constipation or menstrual changes.
Of course, having one or more of these symptoms is not always a sign of cancer. If symptoms continue, however, women need to be on alert. The Ovarian Cancer Research Alliance advises: See your doctor, preferably a gynecologist, if you have these symptoms more than 12 times during the course of one month and the symptoms are new or unusual for you.
Empowering women to be proactive about their own health is a priority for Support Connection, Inc., a Yorktown based not-for-profit that provides free breast and ovarian cancer support programs. Every September, in honor of National Ovarian Cancer Awareness Month, Support Connection launches their annual “Tune In and Take Charge” campaign to bring attention to ovarian cancer. The campaign aims to deliver crucial messages and information about the disease and its symptoms, while encouraging women to speak up to their doctors when something doesn’t seem right.
For women who’ve already been diagnosed with ovarian cancer, Support Connection offers help and support in a variety of forms. There’s personalized one-on-one counseling and resource referral, available by toll-free telephone, email and in person. There are monthly support groups, including one that meets by national toll-free teleconference. Educational and wellness programs take place throughout the year. Informational resources, webinars and articles are shared on the organization’s website. Special events, such as the annual Support-A-Walk for breast and ovarian cancer, provide opportunities for women to connect and share with one another.
Debra benefited from Support Connection’s help when she received her diagnosis. And ever since then, she’s made it her business to share her story whenever she can, hoping to help other women know how to look for ovarian cancer:
“We know when something’s wrong, we just need to listen to our bodies, and be our own best advocates. If you have a concern, see your doctor and make sure they do a thorough exam. It could save your life. It saved mine!”
For more about ovarian cancer and resources for women who’ve been diagnosed:
Barbara Cervoni is director of services and communication at Support Connection, Inc., a Yorktown based not-for-profit organization that provides year round free counseling and other support services to women and families affected by breast and ovarian cancer.
One Call Is All It Takes
By Andrea Karl, BS
Support Connection Peer Counselor
“One call…..will make all the difference.” That’s what you’ll hear from those who call us.
You have our number, you’ve visited our website and Facebook page, but you still wonder if we can help and how we help. During our office hours (Monday through Friday, 9-5), the Peer Counselors on our staff, cancer survivors themselves, are here for you. They are answering calls and emails, and meeting with people. Take a minute and call. Let them tell you “Yes, we can help you” and explain how we can make a difference.
I made that call. My name is Andrea. I’ve been a Peer Counselor for Support Connection for 11 years. Twelve years ago, I was diagnosed with breast cancer. At that time, everyone kept telling me to call Support Connection, but I didn’t know what to say. I thought I could do this by myself. I was wrong. I took one step forward, two steps backward…. two steps forward one step backward. I was stuck in the diagnosis going nowhere fast.
Then one day my family left the house and I just slid onto the floor in a sobbing heap. (I call that my “Bad B Movie Moment.”) Still crying when I picked myself up, I called Support Connection. I said “I don’t even know what type of doctor I’m supposed to be using…. can you help me?” They did. One call to someone who had been diagnosed. Someone who not only understood how confused, lost and vulnerable I was, but also saw the strength and courage I could no longer see. That one call made all the difference.
Patty and Kathie also made that call. Patty called in 2008 after seeing our brochure in her dermatologist’s office. She called that first time seeking information on wigs. A Peer Counselor gave her the information she needed. From that moment on, Patty knew we were here for her… when she needed us to be, and for whatever need she had. Once she was finished with her treatments, Patty started attending a support group. We were still there for her.
Kathie was diagnosed in 2012. Seeing how upset she was, Kathie’s daughter brought her directly to our office. Kathie spoke with a Peer Counselor. After they talked, Kathie said she could finally breathe again. Kathie continued to call and speak with a counselor throughout her treatment. She joined the same support group as Patty.
In the years since they first connected with us, Patty and Kathie have both attended support group and other programs. They’ve also both continued to utilize our Peer Counseling service. Whether it be concern for upcoming medical appointments or test results, or the long-term physical and emotional fallout from surgery and treatment: they call, email or stop by, and we are here continuing to make a difference.
Patty and Kathie recently volunteered together to represent Support Connection at a health fair. A young woman stopped by their table and said her mom had just been diagnosed. She was concerned for her mom. Kathie and Patty explained the work we do. The mom wasn’t a joiner and the daughter wasn’t sure if our services were right for her. Kathie and Patty explained how important that first contact was for them. They encouraged the young woman to tell her mom that even if she simply called here once, it would make all the difference in the world. It did for them. As different as Patty and Kathie are as people, and as different as their situations were, their experiences were the same: that first contact made all the difference in the world.
Call us. You don’t need to have a specific agenda or question. Just call and say you want to talk. We’ll let you know how we can make all of the difference in your world or the world of someone you love. 914-962-6402 or toll-free 800-532-4290.