Sharing with Friends - Fall 2015

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  • A NEWSLETTER FOR BREAST CANCER SURVIVORS

    with Friends

    Beaumont Cancer CenterMailing Address:

    3577 W. Thirteen MileRoyal Oak, MI 48073-6710

    248-551-8585email: sharingandcaring@

    beaumont.edu

    You can make a difference

    Sharing & Caring is a non-profit

    organization devoted to the education and support of

    breast cancer survivors. Donations support

    programs for others who follow in the same

    footsteps and can be made by a check payable

    to Sharing & Caring at the above address.

    What People With Cancer Wish Those Without Cancer Knew

    Beaumont Health

    SharingOctober, November, December 2015

    A cancer diagnosis brings despair not only to the one who has cancer but also to friends and family who want to help, but are unsure of what to do or say. Many women who are newly diagnosed experience overwhelming feelings, emotions and fears. Friends and family really want to assist by providing support and comfort to their loved ones but often struggle when trying to think of the best thing to do. Each individual will have different reactions and needs as they progress though their treatment. Here are some thoughts from our survivors at Sharing & Caring on what they felt was most helpful to them.

    1. Dont wait for me to call you if I need anything. Please call me every once in a while and set up a date and time to come over. I know you told me to call if I ever needed anything, but its weird asking others to spend time with me or help me with stuff I used to be able to do on my own. It makes me feel weak and needy, and Im also afraid youll say no.

    I needed people to come and take charge. When I was going through chemo, I didnt have the energy to change the linens on the bed! What I needed was for someone to look around and then just take charge of what needed to be done. Dont be afraid or embarrassed to ask because I wasnt embarrassed to receive the help. My neighbor brought me a basket with pillows, lavender lotion, a journal, etc. It was so kind and thoughtful and very much appreciated. Just help the person find small joys

    2. CANCER doesnt always end when treatment does. The new normal can be a hard and scary place. After finishing treatment, there can be lingering physical and emotional side effects. Many patients

    deal with the fear of recurrence, fatigue and other treatment related concerns years after treatment has ended.

    Dont tell me I dont look like I have cancer because you have no idea of what cancer looks like! You are not the same person after a cancer diagnosis. It changes your being. You have to learn patience and be kind to yourself because cancer changes your whole world. It changes relationships, health, friendships, income, everything. You never feel normal, your life changes forever and you have to find your new normal.

    3. Forgive me. There will be times when the illness and its treatment make me not myself. I may be forgetful, abrupt or hurtful. None of this is deliberate. Please dont take it personally if I dont call you back or want to visit with you right now, please forgive me. I was grumpy and in a lot of pain after my surgery. It all happened so fast, learning I had cancer and then starting treatment. I just needed some time. I needed some kindness despite my bad attitude, until I started to get back to feeling like myself again.

    4. Learn to Listen. Our first thought is to give advice, however what I really need might be for someone to just listen. Just be there with me without interrupting, judging or having to respond. Be present and available. Talk less and listen more.

    I had radiation. I took a leave of absence from work. People seemed to be surprised that I looked good while I was going through my treatment. They would often question me and I would simply respond by saying that Im radiant!

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    5. Come along and be my note taker. It is hard for me to take all this new medical information in. A lot of it just goes right over my head. Educate yourself, read up on treatments and do some research for me. The information is overwhelming and it is helpful to have someone who has some knowledge about the treatments and disease process. I always remember the people that were there for me. I had a friend who I called when I got disturbing news. I remember calling her and telling her when I found out that I had lymph node involvement. She would be there to hear me and the fear in my words. Then she would research. She would go on-line and read up on what I told her. She really helped me move forward. There were so many decisions to be made. I wrote some things down and would re-read them over and over just to let all the information sink in. There were many things that I dont remember hearing the doctor tell me. Later, I wasnt sure if it was because she didnt say it or if I just didnt hear it.

    6. I dont want to hear about your friend who died of cancer! I am interested in hearing about others who have gone through similar experiences. It is nice to talk to other breast cancer survivors who are doing well, but I want your success stories, not your horror stories. I need hope right now. What Im trying to tell you is that I need to hear positive stories right now. I dont know what is coming next. Im telling you this because Im fearful and just want someone who will listen when I need to talk.

    It is important to remember that everyones needs are different. Just being present is sometimes one of the greatest gifts you can offer.

    We want to know your thoughts. Have we left out something important?

    Join us on facebook and leave your comments on how others helped to support you through a breast cancer diagnosis.

    NOV 12, 2015WHAT CAN

    PHYSICAL THERAPY DO FOR YOU?Interactive Workshop Hosted by

    Oakland University Physical Therapy

    Welcoming Ovarian and Breast Cancer support group members, and their caregivers. Come share an informational (and fun!) evening

    featuring specialized nutrition information and exercise tips to improve your quality of life after diagnosis.

    Monday, November 12, 6-8 pmCall by November 1st to reserve your spot. Space is limited!

    248-689-1146 or 248-551-8585Beaumont Medical Center Family Medicine Building, 44250 Dequindre Rd.

    Sterling Heights, MI. Enter through door labeled ATRIUM

  • 3 Special

    Thanks to Beaumont Cancer Clinical Trial

    s!

    Never doubt that

    a small group of

    thoughtful, committed

    citizens can change the

    world; indeed, it is the

    only thing that ever

    has.

    - Margaret Mead

    We would like to thank Beaumont Cancer Clinical Trials for partnering with us to host some amazing events this past year. Every year we strive to introduce you to new programs that both educate and inspire, and thanks to their ongoing support, we were able to present some stimulating and impressive programs. Some of the projects that we were able to bring you with the generous support of the clinical trials department included The Evening of Shared Awareness, Annie Parker and her film Decoding Annie Parker and Painting with a Twist.

    The goal of our collaboration is to increase awareness about the clinical trials process, allow patients to ask questions, and increase understanding of the key roles that patients play in discovering better treatments for the future. We would also like to thank our survivors for their interest and participation in clinical trials. Your role in furthering the body of knowledge in cancer research is of value to breast cancer patients and survivors. We really appreciate the partnership and generous help in putting on quality programs, as well as

    bringing new and improved treatments here to Beaumont. Our hope is that our patients remain aware of the trials that they are eligible for and continue to have positive experiences with the Cancer Clinical Trials department. If youre interested in learning more or finding an open and enrolling clinical trial, call 248-551-7695.

  • 5October 13th is Metastatic Breast Cancer Awareness Day, soLets Speak Frankly About Metastatic Breast Cancer

    My body is dying......my spirit isnt!

    Mary Rayes -diagnosed with Stage IV breast cancer more

    than 7 years ago.

    Many people find these sites quite helpful and packed with good information:

    Metastatic Breast Cancer Network www.mbcn.org - A patient-led advocacy group dedicated to the concerns of people living with Stage IV disease

    Inspire www.inspire.com - A site where you can join a community of people with issues similar to yours and share thoughts and concerns.

    Living Beyond Breast Cancer www.lbbc.org - Their mission is to connect people with trusted breast cancer information and a community of support.

    Metavivorwww.metavivor.org - Committed to fight for the research that could save lives.

    Im breathing. Im singing, never have I felt so alive.Im breathing. Im singing until the very day that I die.

    Three times cancers come a knocking on my door.Ive escaped twice, but not anymore.Knowing its growing takes a toll on me.Especially when I still feel so damn healthy.

    Im breathing. Im singing, never have I felt so alive.Im breathing. Im singing until the very day that I die.

    Now music may not be the cure for my bodybut it sure soothes my soul, sets my spirit free.And when I am singing I become one with the song,forget for the moment there is something wrong.

    Im breathing. Im singing, never have I felt so alive.Im breathing. Im singing until the very day that I die.

    And as I come to terms with my mortality,I am filled with awe, surrounded by beauty.I will not let fear take control of me.I will stay open to the possibilities.

    Im breathing. Im singing, never have I felt so alive.Im breathing. Im singing until the very day that I die.

    Evie Boss - singer/songwriter 2015

    Did you know that there are 155,000 Americans currently living with metastatic disease? Many people not familiar with metastatic disease (also referred to as Stage IV) do not realize that treatment for metastatic breast cancer is life-long. There is not a set amount of time for treatment, as there is with treatment for newly diagnosed breast cancer. This on-going treatment focuses on control of the disease and quality of life. There are many incredible medical advances that have recently come through the pipeline that are extending survivorship, along with improving the quality of survivorship. Many people live long, productive lives with metastatic breast cancer. A diagnosis of metastatic disease is NOT an automatic death sentence. There are women who have been living full, happy lives with Stage IV disease for 5, 10 years and more!

    Sharing & Caring is teaming up with Gildas Club of Metro Detroit to offer a Frankly Speaking about Metastatic Breast Cancer workshop. Discover resources available for women with metastatic disease and network with other metastatic survivors. Learn the best ways of communicating with your health care team, the latest treatment options and tips on managing side effects. This workshop will help you understand the common challenges of living with metastatic breast cancer and ways to take care of yourself and move forward.

  • 6

    Breast Cancer Support

    Whether you are newly diagnosed, or living with metastatic disease, whatever your age or circumstance, Theres something just right for you!

    You are Not Alone - Peer to Peer Support Group: Thursdays, October 22, November 19 & December 17, 1:00

    pm Royal Oak Beaumont: After the storm of a breast cancer diagnosis and treatment

    you may be left with a lot of unanswered questions and feelings. Sometimes its just nice to talk to others who

    may be dealing with some of the same emotions. Topics of discussion will include dealing with fatigue, fear of

    recurrence, body image concerns, managing anxiety and finding a renewed sense of purpose. Meets in the Royal Oak

    Cancer Center 1st floor classroom.

    STAGE 4 - A Group for Women with Metastatic Breast Cancer: Tuesdays, October 20, November 17 & December 15, 6:30 pm Royal Oak Beaumont

    This group provides an opportunity for survivors who have metastatic breast cancer to discuss the unique challenges and issues they face. Women with stage four breast cancer often feel unable to talk about their cancer. This format provides a safe arena to converse about what is on your mind and in your heart. You are welcome to attend one or all meetings. This meeting will be facilitated by Psychologist Dr. Sally Smolen of Mercy Works in Farmington Hills. We will be meeting in the Resource Center on the first floor of the Rose Cancer Center, Royal Oak.

    Rack Pack: Unique Issues for Young Women with Breast Cancer: Tuesdays, October 13 November 10 and December 8, 6:30 pm

    Are you looking to connect with other young women diagnosed with breast cancer? Our young survivors here at Sharing and Caring are joining forces with the Rack Pack at Gildas Club. This support group will focus exclusively on the unique issues and concerns specific to young women. From parenting young children, concerns about future fertility, managing careers, sustaining relationships, dating and intimacy, young women often have different experiences and can often feel especially alone and overwhelmed. Finding the right support group can bring strength and friendship as young women struggle to balance their personal and professional lives. Meets at the Gildas Clubhouse in Royal Oak. 3517 Rochester Road, Royal Oak, MI Please call 248-551-8585 to find out how you can join this group.

    Breast Cancer Support Group: Mondays, October 19, November 16 & December 21, 10:30 am Troy Beaumont

    The sudden and unexpected changes that go along with a breast cancer diagnosis can be difficult to manage. This small group discussion led by Oncology So...